tag:blogger.com,1999:blog-59599465721996837862024-03-05T11:06:05.803-06:00Rachel Mindruprmindruphttp://www.blogger.com/profile/07021250508807992265noreply@blogger.comBlogger148125tag:blogger.com,1999:blog-5959946572199683786.post-59352684418513246712024-02-06T10:09:00.000-06:002024-02-06T10:09:35.249-06:00Case Study #118 - Rebecca Planting in her Garden<p></p><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgj5VA-WNgkbI3IrXjFr0o1OFGR0Rscw6R9PVSnbn-Rd3-iK3h3kIxn4J7hHetRMWrtRbM4uwsEcqOjOwyh1SNqET96BECyJg0yk4-sz8eH09A_f2QeAKnPPQXBQreEkBMO84qKPb6Y0d_aePocNn_hijFk-jSb_eJ9ZgUUxmohFrfAhnjI6SeDa6SY5RWZ/s636/sketch.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="636" data-original-width="504" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgj5VA-WNgkbI3IrXjFr0o1OFGR0Rscw6R9PVSnbn-Rd3-iK3h3kIxn4J7hHetRMWrtRbM4uwsEcqOjOwyh1SNqET96BECyJg0yk4-sz8eH09A_f2QeAKnPPQXBQreEkBMO84qKPb6Y0d_aePocNn_hijFk-jSb_eJ9ZgUUxmohFrfAhnjI6SeDa6SY5RWZ/s320/sketch.jpg" width="254" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Rebecca prep sketch</td></tr></tbody></table><br /><p></p><p>Rebecca Tovar was in her late 20’s when she was diagnosed with NF1 through spontaneous mutation. In her early 40’s she had a large fibroma removed from her left psoas muscle due to intense pain, while wrestling with the fact that surgery could impair her ability to walk unassisted. Worry started to set in but with family support and faith in God, she knew she could persevere. The surgery was a success but left her with permanent numbness in her thigh.</p><p>Despite having NF, she was grateful to eventually become a patient at Mayo Clinic Phoenix, and her team of doctors, led by Drs. Porter and Noland. While at Mayo, she’s had multiple scans, biopsies, and other tests, as well as a successful surgery to remove debilitating fibromas from her right hand. Rebecca continues to battle NF as she is dealing with large fibromas in other critical areas. Her oldest son, Jacob, also a Mayo patient, has a more severe case of NF, while her middle son, Noah, has a slight case, and her youngest son, Joshua, is unaffected.</p><p>She’d like to bring awareness to others about NF by participating in various NF related functions and activities. She’s happy to have her husband, Chris, and entire family’s support by continuing to pray for her and be with her. Rebecca doesn’t want to be defined by NF and strives to stay positive despite it.</p>rmindruphttp://www.blogger.com/profile/07021250508807992265noreply@blogger.com0tag:blogger.com,1999:blog-5959946572199683786.post-69591269606359351702023-06-28T20:55:00.003-05:002023-08-05T21:15:56.017-05:00Case Study #117 - Antwan Motivating Others<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-5JkR-nquZHODPt74w3kjt4w-DbXf4RVz6tkWD2Vcv8J95m6lUGwUvUv7KkgqWkyMzWkI1IKyM7xXhLpw7j2zRf7UIIRvKKYp2lbMYJ6PLfW5oLPXYGwMG4sihbxHZk2t7cMT1B_g9WyxsVg6A0_Fi7bzfoMNQ3R0jybMgPmSn2HPNPqy3tMqpYAwZKNm/s1881/Mindrup_AntwanMotivating.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1881" data-original-width="1500" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-5JkR-nquZHODPt74w3kjt4w-DbXf4RVz6tkWD2Vcv8J95m6lUGwUvUv7KkgqWkyMzWkI1IKyM7xXhLpw7j2zRf7UIIRvKKYp2lbMYJ6PLfW5oLPXYGwMG4sihbxHZk2t7cMT1B_g9WyxsVg6A0_Fi7bzfoMNQ3R0jybMgPmSn2HPNPqy3tMqpYAwZKNm/s320/Mindrup_AntwanMotivating.jpg" width="255" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">"Antwan Motivating Others" 30" x 24" Oil on Canvas<br /><br /></td></tr></tbody></table>Born and raised in the bustling heart of Kansas City, Missouri, Antwan faced a unique path in life. He was diagnosed with neurofibromatosis and severe scoliosis at the tender age of two. His journey has been one marked by trials and tribulations. Yet, Antwan refused to be defined by these conditions, firmly embracing the belief, “I have neurofibromatosis, but it does not have me.”<br /><br />Beneath Antwan’s surface, neurofibromas attempted to lay claim over his life, an unseen struggle that led to chronic restrictive lung disease. His body transformed, and with it, his life changed. A ventilator and supplemental oxygen became Antwan's constant companions. He was 29 when he first had to start using the ventilator due to his lung having restricted space and not able to fully expand. It started out just when he was sleeping, but overtime his lungs just grew weaker and now he has been having to use the ventilator full time now. Throughout his NF journey, Antwan met adversity head-on. He has undergone 18 surgeries and faced daily medical challenges that would cause many to lose hope. He recognized that adversities did not dictate his destiny; they were stepping stones shaping him into the man he has become.<br /><br />In Antwan’s younger years, doctors cast a shadow over his future, predicting a significantly shortened life expectancy. Contrary to their predictions, Antwan has proven them wrong. At the age of 37, when doctors believed he wouldn’t see past eight, Antwan’s journey through life has been one of unwavering perseverance and determination. He chose to live life on his terms and not be constrained by circumstances.<br /><br /><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhHZ4wvtKaRPK4Sl-QLaL139egs6C8m9dYixDisr_-Qpw8y0sM6lVY1g8qM06P7-sXoSjTmivLca9i_xS7gDYbDvf3E0WE-J-N3znmt9K9R7pbqKCTHn9cMM4p7H62slZi5s8z1buQELo7Z_BNv8ROMS5-n1SNdnoAmW7ik4iDwyKjloEQqXiDMl7IF3BrL/s641/Sketch.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="641" data-original-width="514" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhHZ4wvtKaRPK4Sl-QLaL139egs6C8m9dYixDisr_-Qpw8y0sM6lVY1g8qM06P7-sXoSjTmivLca9i_xS7gDYbDvf3E0WE-J-N3znmt9K9R7pbqKCTHn9cMM4p7H62slZi5s8z1buQELo7Z_BNv8ROMS5-n1SNdnoAmW7ik4iDwyKjloEQqXiDMl7IF3BrL/w161-h200/Sketch.jpg" width="161" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Prep Sketch</td></tr></tbody></table>Antwan’s resolve and tenacity propelled him through undergraduate school receiving a degree in social work at Kansas University and a Masters of Business Administration at Baker University. These milestones are not just academic achievements but symbols of his resilience and testaments of his ability to navigate challenges, affirming his belief that circumstances do not define us.<br /><br />Antwan channeled his trials and tribulations into strength and passion. This ignited within him a desire to inspire and support others facing their hardships. He eagerly shares his conviction that individuals are not victims of their circumstances but architects of their destinies, capable of overcoming adversity.<br /><br />Antwan’s story is a beacon of hope and resilience, reminding others that it is possible to rise above even the most daunting obstacles. While neurofibromatosis is a part of his life, it does not define who Antwan is but is a facet of his complex existence.<br /><br />The painting that bears witness to Antwan's journey is a testament to his indomitable spirit. It portrays defiance in the face of neurofibromatosis and celebrates the power of the human spirit. The canvas is his battleground, where adversity is met with resilience, challenges are confronted with courage, and it becomes a symbol of victory over a disorder that threatens but never conquers.<br />rmindruphttp://www.blogger.com/profile/07021250508807992265noreply@blogger.com0tag:blogger.com,1999:blog-5959946572199683786.post-4771326073537411272023-06-22T08:04:00.006-05:002023-06-22T08:27:08.875-05:00Case Study #116 - Frankie's New Wheels<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbsylXqaDOp5sxGRcjEKv7oUThs8UcnrI3REpoGFfXM_QLelWR82ZfZjW6kpjSwx8azQpp8CevDkUUeJMmt56oRRlzOWpxsttPgdY0FtUrA-3IYOjHhgZFlZWftUZDpIaAwJT6_jopEuTszSacQFVPPgL2CqgGIxMfFVEqFnE9N7DjXMki9bk1AtxQ6iQF/s1949/Mindrup_FrankieNewWheels.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1949" data-original-width="1500" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbsylXqaDOp5sxGRcjEKv7oUThs8UcnrI3REpoGFfXM_QLelWR82ZfZjW6kpjSwx8azQpp8CevDkUUeJMmt56oRRlzOWpxsttPgdY0FtUrA-3IYOjHhgZFlZWftUZDpIaAwJT6_jopEuTszSacQFVPPgL2CqgGIxMfFVEqFnE9N7DjXMki9bk1AtxQ6iQF/w308-h400/Mindrup_FrankieNewWheels.jpg" width="308" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">"Frankie's New Wheels" Oil on Canvas. 2023. 40" x 30"</td></tr></tbody></table><br /><div class="separator">Franklin was born with a genetic disorder called Neurofibromatosis (NF). He was 4 months old when his parents were told he would never walk, talk or have the abilities more than an infant. They were warned he likely wouldn’t live to see his first birthday.Today, Franklin is a happy 13-year-old boy, always smiling and ready to play or have a book read to him. He loves to shake hands with everyone he meets and often greets everyone at church and school with a handshake or a high-five. He knows his colors, shapes and most body parts. He often will scootch on his bottom to the table with his IPad on it and drag it to someone to start his music videos. He currently is in love with Miranda Lambert. Franklin uses modified sign language or pictures to tell us many things: when he is hungry, wants to go to bed, watch videos, play games, or get on the bus to go to school. Daily he walks, using a walker for support, nearly 2 miles at school. He goes to the pool twice a week to do water therapy and get a few piggyback rides in the water too. </div><div><div><br /></div><div><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEirtAan4mAPYiTROD5YgBT3fFnAZ9-DS062ww-Gg6mOlyK6XOHVhWGw85idfhytqsvsnsikVE-Y78e61tY5Wkbb8LRFy_4lZ1zGyVUuFj8VDeEyQx1aYEp8YANPJ94jsmURcSSXL0GYsWtOF0MUQYILbv36TcQ17D1m2CVWYby5mWEx3YHO-OdKzl3fl8VP/s608/PencilSketch.jpg" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="608" data-original-width="480" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEirtAan4mAPYiTROD5YgBT3fFnAZ9-DS062ww-Gg6mOlyK6XOHVhWGw85idfhytqsvsnsikVE-Y78e61tY5Wkbb8LRFy_4lZ1zGyVUuFj8VDeEyQx1aYEp8YANPJ94jsmURcSSXL0GYsWtOF0MUQYILbv36TcQ17D1m2CVWYby5mWEx3YHO-OdKzl3fl8VP/w158-h200/PencilSketch.jpg" width="158" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Prep Sketch</td></tr></tbody></table>The family has a nurse that helps Franklin 40 hours each week. She attends school with him and accompanies him to the many many doctors appointments. Franklin sees seven specialists and many therapists on a regular basis. Franklin is trach and g-tube dependent. He needs assistance to walk, bathe, eat, and dress. In 2014, Franklin’s airway had become so compressed it was less than 3 millimeters at it’s most narrow. His tumor was wrapped into his airway and down into his heart valve compromising both and yet they continued to grow at a very rapid rate. The family was told to again prepare to bury their child. Doctors were stumped about what to do and reached out to others. His scans were sent to Cincinnati Children’s and doctors there agreed to see him. In early 2015 a longer trach was placed in Franklin’s airway to open it up and stabilize it. In 2016, Franklin qualified to start an investigational drug. In the first 2 ½ years that followed the family drove 12 hours each way to get this life saving drug. They logged 726 hours driving, over 41,380 miles or nearly twice around the entire Earth. Franklin's family spent over 119 nights in a hotel room. In that same 2 ½ years Frankie’s targeted tumors shrunk 33%. His family continues to travel, and his tumors continue to remain stable 7 years later. Today, Frankie is stable and the healthiest he has ever been. He is smart, funny, cute, onery, and a flirt. Every day he shows us how to live life to the fullest. This is NF.</div><br /><br /></div>rmindruphttp://www.blogger.com/profile/07021250508807992265noreply@blogger.com0tag:blogger.com,1999:blog-5959946572199683786.post-74450556120290484172023-06-20T17:59:00.000-05:002023-06-20T17:59:31.161-05:00Case Study # 114 and #115 - Thad's Eye Surgery<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhtG0nv4CWqjAYKxoUCeYRkb93DCF3K8ZzLM4HI386TBckvLDYapDjWVVGIUsUa-QhXpdcoqFUxPRyF6pV79HKTR1gss9r0ZF3zvwktYsoxbBd2S2adebfqe1qx_nTxjOQsfBnOInKhlDqDak3puLv2UW26uccJt8D6yr4xCrxgxYgxRgt5C-BkQP3QdjTJ/s4866/BeforeAfter.jpg" style="display: block; margin-left: auto; margin-right: auto; padding: 1em 0px; text-align: center;"><img alt="" border="0" data-original-height="2433" data-original-width="4866" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhtG0nv4CWqjAYKxoUCeYRkb93DCF3K8ZzLM4HI386TBckvLDYapDjWVVGIUsUa-QhXpdcoqFUxPRyF6pV79HKTR1gss9r0ZF3zvwktYsoxbBd2S2adebfqe1qx_nTxjOQsfBnOInKhlDqDak3puLv2UW26uccJt8D6yr4xCrxgxYgxRgt5C-BkQP3QdjTJ/s400/BeforeAfter.jpg" width="400" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;"><span class="imageTitle" face="Verdana, Geneva, sans-serif" style="background-color: white; color: #666666; font-size: 12px; text-align: left;">The Journey Starts Today (Before and After)</span><br style="background-color: white; color: #666666; font-family: Verdana, Geneva, sans-serif; font-size: 12px; text-align: left;" /><span class="imageYear" face="Verdana, Geneva, sans-serif" style="background-color: white; color: #666666; font-size: 12px; text-align: left;">2022</span><br style="background-color: white; color: #666666; font-family: Verdana, Geneva, sans-serif; font-size: 12px; text-align: left;" /><span face="Verdana, Geneva, sans-serif" style="background-color: white; color: #666666; font-size: 12px; text-align: left;">Oil on Canvas</span><br style="background-color: white; color: #666666; font-family: Verdana, Geneva, sans-serif; font-size: 12px; text-align: left;" /><span class="imageDimension" face="Verdana, Geneva, sans-serif" style="background-color: white; color: #666666; font-size: 12px; text-align: left;">Diptych, Each 36" x 36"<br /><br /></span></td></tr></tbody></table><span style="font-family: inherit;">Thad is a Pokémon-loving third grader who was born in Washington, DC and lives in Mesa, AZ with his mom, sister, bonus dad, and bonus brother and sister. He is our courageous little king (that’s what his name means!) and we love him so. You couldn’t meet a stronger, more brave young man. His favorite color is red, and he has some pretty awesome signature dance moves. If you meet him, definitely challenge him to a dance off. Also, if you know how to launch a successful YouTube channel, let him know cause that’s his dream. And he wants to be a life coach when he grows up. We think he’d be great because he has been doing hard things since the beginning.</span><div><span style="font-family: inherit;"><br /></span></div><div><span style="font-family: inherit;">This painting shows Thad's <span color="var(--primary-text)" style="font-size: 0.9375rem; white-space-collapse: preserve;">Enucleation procedure which is performed as a last resort, most often due to ocular tumors. </span>The swelling, bruising and discomfort subsides over time. Six to eight weeks following enucleation, a patient will visit with an ocularist to fit a custom ocular prosthesis.Once the contents of the eye are removed, an implant is placed into the scleral shell. The sclera, Tenons, and conjunctiva are then closed over the implant and a temporary (clear plastic) conformer is put in place. The real artificial eye (prosthesis) is made in about 6-8 weeks.Thad had to have fat removed from his side (they had a really hard time finding any) and put into his eye cavity during a second, unplanned, surgery because the first time it didn’t take. All in all, he had three eye surgeries for the enucleation. Two for the original removal and one to lift the lid. This is in addition to the surgeries he had as a baby on his eye.</span></div>rmindruphttp://www.blogger.com/profile/07021250508807992265noreply@blogger.com0tag:blogger.com,1999:blog-5959946572199683786.post-10965304335826524502023-06-19T22:17:00.006-05:002023-06-22T08:42:04.295-05:00Case Study # 113 - Eli After Surgery<p> </p><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwJS3lHYyo6d1AxrJ8ITBgwuXNkeDyb_w0Yt_3k5xJyllETp3SCCQv_CXf7ABkNwXLCJSHFJAR7zBbmyAzuRFU5fZbaX9hbUpSNACuYcOoIu6CxGwHTUEHMWAtZtG6Z0m5kOnUg_6LCCprnPjaHXC11npjl7JoFPBFDcFm8GmdXyfFdDI7jTf5Oh99EEPJ/s1940/Mindrup_VS_EliDuby.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1940" data-original-width="1500" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwJS3lHYyo6d1AxrJ8ITBgwuXNkeDyb_w0Yt_3k5xJyllETp3SCCQv_CXf7ABkNwXLCJSHFJAR7zBbmyAzuRFU5fZbaX9hbUpSNACuYcOoIu6CxGwHTUEHMWAtZtG6Z0m5kOnUg_6LCCprnPjaHXC11npjl7JoFPBFDcFm8GmdXyfFdDI7jTf5Oh99EEPJ/s320/Mindrup_VS_EliDuby.jpg" width="247" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;"><span face="Verdana, Geneva, sans-serif" style="background-color: white; color: #666666; font-size: 12px; text-align: left;">Sound After Vestibular Schwannoma Surgery<br />40" x 30" Oil on Canvas. 2021.</span></td></tr></tbody></table><span face="Verdana, Geneva, sans-serif" style="background-color: white; color: #666666; font-size: 12px;"><br /></span><p></p><p><span style="font-family: inherit;"><span face="Verdana, Geneva, sans-serif" style="background-color: white; color: #666666;">Medical procedures have been a part of Eli’s life for his entire 14 years. When he was a baby, E was diagnosed with a rare eye condition, in which his retina detached at 12 months, leaving him ultimately blind in his left eye. His right eye has a small cataract that continues to be monitored. At 5, Eli was diagnosed with Neurofibromatosis type 2 (NF2), after a skin biopsy. Very young for a person, especially with a spontaneous case, to be diagnosed. This is when more procedures came about.</span><br style="background-color: white; color: #666666;" /><br style="background-color: white; color: #666666;" /><span face="Verdana, Geneva, sans-serif" style="background-color: white; color: #666666;">When Eli was 9 he had a C-5 tumor removed that was pressing on his spinal cord, and another at T-5 at age 11. MRI’s, audio exams, eye exams and numerous specialist visits across the country have been a common part of life. At age 13 when Eli’s hearing began to show decline and his right Vestibular Schwannoma (tumors on his auditory nerves which control hearing and balance) began to grow, he had cranial surgery in an attempt to preserve hearing. The family was unsure if Eli would wake up with any hearing at all in that ear, but thankfully, his hearing has remained stable after surgery.</span><br style="background-color: white; color: #666666;" /><br style="background-color: white; color: #666666;" /><span face="Verdana, Geneva, sans-serif" style="background-color: white; color: #666666;">Although the family is never free from appointments, change or worry, Eli is an amazingly well adjusted and resilient teen boy, who loves friends, skating, bike stunts, and to wear his earbuds, and thankfully, is still able to listen to music through both.</span></span></p>rmindruphttp://www.blogger.com/profile/07021250508807992265noreply@blogger.com0tag:blogger.com,1999:blog-5959946572199683786.post-13451013869006425382023-06-14T20:21:00.002-05:002023-06-21T15:14:09.146-05:00Case Study # 112 - Jacob on a Photo Shoot<p></p><p><span style="font-family: inherit; font-size: 0.9375rem; white-space-collapse: preserve;"><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEj8WkDnT2ZVZPdbJpJnpMJiaKgI6wcs8xvbx9bgGzX1Z2XqtRdvCNNDuOjEdvHgHHbb3QV7pYw9RgACnf7uxlgv_x6P3-5XeZC0IK8SxlrnBm_cmAqipUKyc9WHpl4LJ12Hnat58Yb2cyTomH2byKjCGHyPBxDn66o_4WFkflyBS4ishmfEgpnYh4P9of/s1864/Mindrup_JacobPhotoShoot.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1864" data-original-width="1500" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEj8WkDnT2ZVZPdbJpJnpMJiaKgI6wcs8xvbx9bgGzX1Z2XqtRdvCNNDuOjEdvHgHHbb3QV7pYw9RgACnf7uxlgv_x6P3-5XeZC0IK8SxlrnBm_cmAqipUKyc9WHpl4LJ12Hnat58Yb2cyTomH2byKjCGHyPBxDn66o_4WFkflyBS4ishmfEgpnYh4P9of/s320/Mindrup_JacobPhotoShoot.jpg" width="258" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">"Jacob on a Photo Shoot" 2023. Oil on Canvas. 30" x 24"</td></tr></tbody></table><br />Jacob was diagnosed with Neurofibromatosis Type 1 as a baby. Having this disease has been difficult for him at times, but it also had made him who he is today. Jacob went through a number of clinical trails as a child to try to reduce the size of one of his tumors. He had to spend a lot of time at the National Institute of Health (NIH) where he had to get a variety of different tests done every 3 months for a few years to monitor the tumor growths. As he got older none of the clinical trails he had participated in worked, so now he just gets checked up on once or twice a year to make sure there has been no growth or any additional tumors that have shown up. </span></p><p style="text-align: left;"><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqZDjgCVLJKrzqXzrso-gjLhdQPs7CNJPRbyxlKVe0p25QBG_DWE8kpf7oQkRwU22Z692HLFW7z_ENyhoTm8LWAT62C8FFn1BRbT4jmA5VY1viQxDas1Jvigy84nI5eLoiDwXVjkMGmKOaCmSUPOgOtAkToxtXNH29ZnfvnQl-Um_g_HgAP_Xa4SvtOw/s576/JacobCamera.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="576" data-original-width="464" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqZDjgCVLJKrzqXzrso-gjLhdQPs7CNJPRbyxlKVe0p25QBG_DWE8kpf7oQkRwU22Z692HLFW7z_ENyhoTm8LWAT62C8FFn1BRbT4jmA5VY1viQxDas1Jvigy84nI5eLoiDwXVjkMGmKOaCmSUPOgOtAkToxtXNH29ZnfvnQl-Um_g_HgAP_Xa4SvtOw/w161-h200/JacobCamera.jpg" width="161" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Prep Sketch for "Jacob on a Photo Shoot"</td></tr></tbody></table><span style="font-family: inherit; font-size: 0.9375rem; white-space-collapse: preserve;">Jacob lives a pretty normal life where he lives with his girl friend and his dog. He works a 9-5 job and does photography on the side in hopes to pursue photography full time one day. Jacob deals with pain occasionally, but does not let it affect his day to day life. He has always lived by the motto’s “Survive and Advance” and “Built Different.” Jacob helps raise NF awareness around the Kansas City area by participating in the Shine a Light Walks with all the proceeds going to help the Children's Tumor Foundation.</span></p><p style="text-align: right;"><span style="font-size: 15px; white-space-collapse: preserve;"><br /></span><span style="font-family: inherit; font-size: 0.9375rem; white-space-collapse: preserve;"></span></p>rmindruphttp://www.blogger.com/profile/07021250508807992265noreply@blogger.com0tag:blogger.com,1999:blog-5959946572199683786.post-33663302423602656172023-04-30T15:59:00.002-05:002023-05-02T15:02:14.657-05:00Case Study #111 - Odessa Enjoying Nature<p> <table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJKHu54wS_sAarsU4zX6u_ZjKiwlC3_trRAiU5oN3WKNRH_Sl3c99-dScvo9uaGu5kDyRe53LXEQ7oRA4TJWZBwkjwFi38qPEpRX2qymBitNTm3hEr3B-hFoOygdJJgENyZoHq7kZdJr0jyFU99vPAliUu1EimYY5q8R3pRL7IjBuXQpvJdpWCFKT5ZQ/s612/Mindrup_OdessaEnjoyingNature.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="612" data-original-width="500" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJKHu54wS_sAarsU4zX6u_ZjKiwlC3_trRAiU5oN3WKNRH_Sl3c99-dScvo9uaGu5kDyRe53LXEQ7oRA4TJWZBwkjwFi38qPEpRX2qymBitNTm3hEr3B-hFoOygdJJgENyZoHq7kZdJr0jyFU99vPAliUu1EimYY5q8R3pRL7IjBuXQpvJdpWCFKT5ZQ/w326-h400/Mindrup_OdessaEnjoyingNature.jpg" width="326" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">"Odessa Enjoying Nature" 30" x 24" Oil on Canvas</td></tr></tbody></table><br /></p><p></p><p>Odessa Black had big blue eyes, long eyelashes, strawberry blonde hair and a smile that would light up a room. She was a master at playing UNO, loved watching women’s soccer games and telling jokes. Odessa always had an affinity for babies and children and especially loved rainbows, butterflies, and koalas. Odessa was sassy, quick witted and had an impeccable memory. She loved to tease her family and friends and was never afraid to share her opinion. She had a pure soul, was very loving, and cared so deeply. She would make a lasting impression on everyone she met. People would meet her and always remember her, she was truly unforgettable.</p><p>Odessa was having learning difficulties in 1st grade. After many medical tests, she was diagnosed with Hydrocephalus. She had a shunt placed in her brain to relieve the excess fluid. Then at a routine eye exam, lisch nodules in the iris of her eyes and a few café-au-lait spots were found which led to Odessa’s Neurofibromatosis Type 1 (NF1) diagnosis. Until this point, we had never heard of NF and Odessa was the only person in our family to have NF. Our life as a family would never be the same.<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwUYWQWYD4Wjt_iXAGC7F1ArfTUmp9kCYAjdLE1IoV0U96kTdLIN93CNka797uYjx8ovhnxrzQhBHYisDizZ6-ll0YvW2IxTu6q0j7P59y4iHblf3Sc4nLrZQjamEC5H8TW5iDAcX_EOpSpgK8j7_DkakJ_ghVBkmO6ejZbVXaHs41WNNqbS7wwnSFjA/s608/sketch.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="608" data-original-width="496" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwUYWQWYD4Wjt_iXAGC7F1ArfTUmp9kCYAjdLE1IoV0U96kTdLIN93CNka797uYjx8ovhnxrzQhBHYisDizZ6-ll0YvW2IxTu6q0j7P59y4iHblf3Sc4nLrZQjamEC5H8TW5iDAcX_EOpSpgK8j7_DkakJ_ghVBkmO6ejZbVXaHs41WNNqbS7wwnSFjA/w163-h200/sketch.jpg" width="163" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Prep sketch--might redo her expression</td></tr></tbody></table></p><p>From age 6 until age 14, Odessa didn’t have many NF related problems. Then at a routine MRI, a tumor was found on her lower lumbar spine. After three surgeries, the tumor was completely removed along with her right L4 nerve root. Not long after, she started having neck pain and another MRI revealed tumors in her neck, specifically two that were growing like barbells pinching her spinal cord at C2-C3. After three major surgeries to remove them, they kept growing back.</p><p>When Odessa was 21, she had a MPNST (Malignant Peripheral Nerve Sheath Tumor) in the sciatic nerve in her left leg. Removing that high grade cancerous tumor resulted in no function below her knee and her foot. Thankfully it was fully removed and she did not require any further treatment. Odessa was a rare MPNST survivor! Odessa was determined to live her life as best she could. She continued to walk, although with great difficulty, for four more years.</p><p>Odessa loved nature. As a child through her young adulthood, she enjoyed experiencing life around her. From finding box turtles and baby bunnies in our yard, to capturing caterpillars and discovering what kind of butterflies they turned into. She had two dogs in her life, first a golden retriever named Leeloo and lastly a golden doodle named Milla. They would sleep on her bed and keep her company through her many surgical recoveries. When she could, we traveled to zoos and arboretums to experience the butterfly enclosures and she loved feeding birds at aviaries. Some of her biggest smiles happened when she was covered in butterflies or having birds perched on her arms.</p><p>She had an affinity for snow, and would ask her “Grandma Angel” for a lot of snow whenever it was in the forecast and smiled ear to ear while we complained of having to shovel it off the driveway. Odessa loved to play snow-ball fetch with Leeloo until her nose was bright red from the cold.</p><p>Over the years, Odessa had well over 100 MRIs and 27 surgeries. With each surgery there was significant nerve damage which resulted in loss of sensation and function in her body. She participated in a number of clinical trials with the hope of slowing the growth of the tumors. One drug actually made her tumors shrink and she regained a little function but she did not stay on it due to the study ending and the severe side effects. Unfortunately, all her improvement was lost.</p><p>The result of all the surgeries and the continual growth of the tumors on her spine left Odessa without the ability to walk, move her arms, or use her hands to any large degree for the last several years of her life. Even with the adversities brought on by NF over the years, Odessa was a happy person and she was able to adapt. She had been fully functioning, graduated from high school, had a part-time job, driver’s license and was fiercely independent. She then became totally dependent because of the NF. It was heartbreaking to know that no matter how hard we tried, we could not fix her or make her well.</p><p>It got to the point where Odessa could only move one finger which was just enough to scroll through Facebook. It was her window to the outside world and to keep up with the people she knew. As the tumors continued to grow, Odessa got weaker. She had trouble breathing and eventually her body simply wore out. She was truly a NF warrior and she could no longer fight the battle.</p><p>She was a force to be reckoned with, uniquely her own, and truly unforgettable. We all miss her greatly. We love you, with all our heart, to the moon and back, our rainbow girl.</p>rmindruphttp://www.blogger.com/profile/07021250508807992265noreply@blogger.com1tag:blogger.com,1999:blog-5959946572199683786.post-8403214826367731182023-04-13T09:59:00.001-05:002023-09-01T11:09:51.351-05:00Case Study #110 - Sahil Playing Tennis<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvcuVjgytY25svSvBSWS9V30OGxLKQbmNV0ol_4sk5PaHEjfQ6Cd51nrAefcCT4mG7oc0qCWaa486Ay9sTPWtblEjz4zXXxns1PgAddDhmq6_LarRjJH6gQfp8u2hx_kLX8epK4b1XVG3Sc3HP6tBDeMfYvfx1X0hhbPx_tr4HGn6F85putuKKXMYWZpHa/s1989/Mindrup_SahilTennis.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1989" data-original-width="1500" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvcuVjgytY25svSvBSWS9V30OGxLKQbmNV0ol_4sk5PaHEjfQ6Cd51nrAefcCT4mG7oc0qCWaa486Ay9sTPWtblEjz4zXXxns1PgAddDhmq6_LarRjJH6gQfp8u2hx_kLX8epK4b1XVG3Sc3HP6tBDeMfYvfx1X0hhbPx_tr4HGn6F85putuKKXMYWZpHa/w301-h400/Mindrup_SahilTennis.jpg" width="301" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Sahil Playing Tennis</td></tr></tbody></table><br />Sahil Shah was diagnosed with NF1 at a very early age. Growing up, he was constantly reminded of his condition by the various medical appointments and treatments that he had to undergo. He was embarrassed about the café-au-lait spots on his skin and frustrated by the constant chronic pain from the neurofibromas that interrupted his everyday life. He first felt “bumps” pop up all around his body at the age of nine, and he wondered why nobody around him was going through the same thing. He went into his first appointment with his NF specialist and remembers being terrified at the fact that his “bumps” were really tumors and that he had an increased risk of cancer due to NF1. As he returned home from the appointment, he made the mistake of looking up NF1 online and immediately became confused and anxious. Over the course of the next year or so, one of the tumors on his forehead continued to grow at a rapid rate, and his NF doctor decided it was time to get surgery. Surgery was very scary for him, and even though it went well, he still could not shake the images that he had seen on the internet out of his head. As the years went on, he developed plexiform neurofibromas in his neck that have often caused him to have intense migraines and headaches. he has tried explaining the pain and the frustration to his family, who have constantly been supportive of him, but because they do not have NF, they weren’t able to truly understand what he was going through.<br /><br /> Because of this he often felt alone in his battle with NF, with no one to explain his pain to. But one day this summer, while expressing the pain from a migraine he had the night before to his brother, we thought to each other, “What if we created a community of kids and young adults who could understand what it’s like to live with NF?”. <br /><br /><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4riAM0Y7ywhR-FQgGoc8JBIc-UlscYS1hHAV5idM35gCSbp4M9u_JM530WQtrqQNtSKNnjpv42YW1iYeCljYN-dzLJvnJk78c25zxWcnzoKTFBhK_cwlFwH44ivsZNgIB9_iMp-7g5Mi-ADpZmyvu1ZCBXBlKQgf29YzTYyv7ftUOVQxA4E81dIfU8A/s698/SahilSketch.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="698" data-original-width="544" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4riAM0Y7ywhR-FQgGoc8JBIc-UlscYS1hHAV5idM35gCSbp4M9u_JM530WQtrqQNtSKNnjpv42YW1iYeCljYN-dzLJvnJk78c25zxWcnzoKTFBhK_cwlFwH44ivsZNgIB9_iMp-7g5Mi-ADpZmyvu1ZCBXBlKQgf29YzTYyv7ftUOVQxA4E81dIfU8A/s320/SahilSketch.jpg" width="249" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Prep Sketch of Sahil Playing Tennis</td></tr></tbody></table>This is where SketchNF was born. As he and his brother searched the internet searching for these communities, they stumbled across Doodle4NF, a previous initiative created by NF Network. They saw that Doodle4NF had celebrities create drawings and auctioned them off, and they thought, “What if we adapted this concept to include members of the pediatric NF community, and instead of celebrities doing the drawings, it would be the kids themselves?” Not only would this empower children with NF by allowing them to fight for themselves and to express their own battles and emotions that have come along with the condition, but we believed that, through art and social media, we could create a wide-spanning pediatric community that would ensure no child with NF would ever have to feel alone again.<br /><br /> Despite facing numerous challenges and setbacks along his journey with NF, Sahil's determination remains steadfast as he continues to pursue his diverse range of interests. From playing tennis, ping pong, and pickleball, to working in a lab conducting scientific research on NF this summer, Sahil finds great joy and fulfillment in these endeavors, refusing to let his condition hold him back.”<br />rmindruphttp://www.blogger.com/profile/07021250508807992265noreply@blogger.com0tag:blogger.com,1999:blog-5959946572199683786.post-17300497164161366102023-03-21T08:48:00.003-05:002023-11-28T20:07:33.771-06:00Case Study #109 - Cody Serving it Up<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjm3zqWCaPmHmdzw9fCAeCBk2nS1D4bXJYMG-SML7F6V-ORNgcEq5_hr6YLzwr26DMReGkPaO3KPeij9auGqTjIrkMU26NbfW50MTzBD7THBvTwfsgRyGwghNc71fMj7ZozYkXA6U-1Bsg02_vdhXgGjguNKGUanVfKjQnQiQYrm1QpnCTuwxB2deQoi_a0/s1895/Mindrup_CodyServingUp.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1895" data-original-width="1500" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjm3zqWCaPmHmdzw9fCAeCBk2nS1D4bXJYMG-SML7F6V-ORNgcEq5_hr6YLzwr26DMReGkPaO3KPeij9auGqTjIrkMU26NbfW50MTzBD7THBvTwfsgRyGwghNc71fMj7ZozYkXA6U-1Bsg02_vdhXgGjguNKGUanVfKjQnQiQYrm1QpnCTuwxB2deQoi_a0/w316-h400/Mindrup_CodyServingUp.jpg" width="316" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">"Cody Serving it Up" 30" x 24" Oil on Canvas</td></tr></tbody></table><br /><div>At age 35, Cody Eaves, a manager at a local bbq restaurant, was diagnosed with NF2. After a trip back to the dentist office thinking the numbness in his mouth was from a recent root canal, but instead, an MRI found bilateral acoustic neuroma.</div><br /><div> He ended up having brain surgery at age 36 to remove the 2.7 cm tumor on his left auditory nerve, which left him deaf in the left ear, with with some facial paralysis. <br /><br /></div><div> The news of his new diagnosis of NF2 prompted some lifestyle changes. He picked up running, and lost over 50lbs. His wife jokes that they must have crossed some wires around during surgery. He’s completed multiple half marathons, a half Ironman, and has just finished his 7th marathon, with no end in sight. <br /><br /><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwrydNzSDRWIaI13Xf18s-9-ejxdzaqRMtyI0c_SMcwCwXs2aZ_aZCbwVn6CZTocT_6iohFETurBIzMbc2LG_Vw42n-3UuiQRPUB8FACGMISRdmdqqcZOE3WueymQqEWSkthUkEFIRP861_wO-nByiUdXc5EotqbliFTaMXddEReb039EMPN5lKj8Zmw/s556/CodySketch.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="556" data-original-width="447" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwrydNzSDRWIaI13Xf18s-9-ejxdzaqRMtyI0c_SMcwCwXs2aZ_aZCbwVn6CZTocT_6iohFETurBIzMbc2LG_Vw42n-3UuiQRPUB8FACGMISRdmdqqcZOE3WueymQqEWSkthUkEFIRP861_wO-nByiUdXc5EotqbliFTaMXddEReb039EMPN5lKj8Zmw/w161-h200/CodySketch.jpg" width="161" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Prep Sketch</td></tr></tbody></table></div><div> Cody says although he would not choose to have NF, NF has given him a better outlook on life. He thanks God for everyday he gets to spend with his family and friends, and the ability to run for the NF Endurance team to raise awareness for a cure.</div>rmindruphttp://www.blogger.com/profile/07021250508807992265noreply@blogger.com0tag:blogger.com,1999:blog-5959946572199683786.post-61661689482795753832023-02-11T16:40:00.002-06:002024-02-24T16:13:48.323-06:00Case Study #108 - Kate Enjoying the Afternoon<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVP4uji83nN_mYB-XVVqXCs0UPkUvGzWS8CkJoryy36MtPPME5-3Fh5CrY4b5BtrCkSk694yjNO58ixnh7isIZwvfYqvVoPmW24tDlEj92KsfAsj1CP2kbnYFfvQ2WnNj5ynuGwkzsz0rw9EGH4RDGCNK2Zn333hgQ7YSUOqRAmQNmAX0XyvmhPbL6rsYI/s500/Mindrup_KateEnjoyingAfternoon.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="500" data-original-width="400" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVP4uji83nN_mYB-XVVqXCs0UPkUvGzWS8CkJoryy36MtPPME5-3Fh5CrY4b5BtrCkSk694yjNO58ixnh7isIZwvfYqvVoPmW24tDlEj92KsfAsj1CP2kbnYFfvQ2WnNj5ynuGwkzsz0rw9EGH4RDGCNK2Zn333hgQ7YSUOqRAmQNmAX0XyvmhPbL6rsYI/w320-h400/Mindrup_KateEnjoyingAfternoon.jpg" width="320" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">"Kate Enjoying the Afternoon" Oil on Canvas. 30" x 24". 2024 </td></tr></tbody></table><br /><div><br /></div><div>Kate Huynh was diagnosed with NF1 when she was 12 because of the cafe au lait spots. When she was growing up, small fibromas started to appear all over her body. Nobody in her family seems to have it. </div><div><br /></div><div>At that time, NF1 was not well known in her country of Vietnam. Not many doctors and people know about this condition. People always ask, “What’s wrong with you?” and sometimes they suggest weird herbal remedies for a “cure”, but none of the remedies or suggestions have never worked out. Dealing with all emotional part has been the hardest for her. But the most interesting aspect was her friend who enjoys fidgeting with her fibromas, when they understood about her condition and knew that it was not contagious and did not affect anybody when the two friends would interact. </div><div><br /></div><div><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRxB5h7gtl4gtz0DHcvxSrQ5s0rDPzNMuNN3rtPuWg39-d26Ley8j_I-OlcjoaUpu20CEbw6KlkVeWcWaMsbHL2-ZQIsonRYeTuOc4fUwqKGz05o4y_X1sgv4UDPpvcapty7nLX0vCkleyyIeUqgqwpMCOekBH5fJ2KWjMon2QAlMwGJifrJW_XXJJjQ/s527/VyHuynhAfternoon.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="527" data-original-width="401" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRxB5h7gtl4gtz0DHcvxSrQ5s0rDPzNMuNN3rtPuWg39-d26Ley8j_I-OlcjoaUpu20CEbw6KlkVeWcWaMsbHL2-ZQIsonRYeTuOc4fUwqKGz05o4y_X1sgv4UDPpvcapty7nLX0vCkleyyIeUqgqwpMCOekBH5fJ2KWjMon2QAlMwGJifrJW_XXJJjQ/w152-h200/VyHuynhAfternoon.jpg" width="152" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Prep sketch for painting</td></tr></tbody></table>When Kate was 17, her left knee was hurting and getting bigger. The doctors found a tumor inside her left knee and she had her first operation to remove a plexiform neurofibroma that was growing inside causing the discomfort. Since then, her life has been full of regular MRIs scans and check ups. She has had around 4 knee operations. </div><div><br /></div><div>Luckily, in 2019, she met Dr Mckay Mckinnon from Chicago. Dr. McKinnon is a plastic surgeon who helped her by removing the annoying tumors in her left buttock, thigh and leg. Kate is going to have another operation again when Dr. Mckay Mckinnon returns to Vietnam, hopefully within the upcoming year. Kate already has many of her family members living in the United States and is hoping that eventually she'll be able to come to the US to visit.</div><br />rmindruphttp://www.blogger.com/profile/07021250508807992265noreply@blogger.com0tag:blogger.com,1999:blog-5959946572199683786.post-83388352802508550432023-01-21T16:48:00.001-06:002023-03-24T16:20:32.575-05:00Case Study #107 - Duke Reading His Favorite Magazine<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjC6-dkNfXs03wumS77Go9ugcWLYK17RzTWVOyqx2td-vKWgepq8WCmrjWbUNlV9Oy3Lgri6M2C7f3VgSONbOfVE46xNvr3THtJpAyWL5XmLkvGOKX_IcJo_aUblMAHWqG8sl0eLp4eCihoKLio24hD5SL5DbeaRvVGBK5RiCjAC9vywpBzcvphkaIr7g/s1868/Mindrup_DukeReadingMagazine.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1868" data-original-width="1500" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjC6-dkNfXs03wumS77Go9ugcWLYK17RzTWVOyqx2td-vKWgepq8WCmrjWbUNlV9Oy3Lgri6M2C7f3VgSONbOfVE46xNvr3THtJpAyWL5XmLkvGOKX_IcJo_aUblMAHWqG8sl0eLp4eCihoKLio24hD5SL5DbeaRvVGBK5RiCjAC9vywpBzcvphkaIr7g/w321-h400/Mindrup_DukeReadingMagazine.jpg" width="321" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">"Duke Reading a Magazine" 30" x 24" Oil on Canvas.</td></tr></tbody></table><br /><div>Duke Smith was diagnosed with neurofibromatosis type one (NF1) as a young child. He was seen by several specialists at Shriners hospital to confirm the diagnosis. As a child he had just a handful of surgeries to help manage some of the symptoms of NF. He, like many other patients with NF struggled in school, learning was a challenge but he persevered and graduated high school. He has a slight speech impediment which can be typical for people with NF. He didn’t develop the skin tumors until young adulthood, and now he has a lot of them throughout the body. Duke suffers from itching and pain, but he keeps pushing through. Duke feels lucky that he doesn’t have the severity of NF symptoms like many others do. Duke loves reading and especially enjoys suspense and horror stories. He has great knowledge of celebrities which he will then share facts about them during movies and television shows. One could ask him anything about celebrities and he probably could answer correctly. </div><div><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJV1KlRoH7BFuzi_7T0Ex1UTWhMdd8ecE9H-DaSJRGMELHYfePQZu9Xm5vTG5XL1IFXYnK5kJmlJ4EtR_rFRhfmqLpbX_j2wgKJaA2FsYlHC3fW8wo9sbpCrbfUjWPO2M3Wmpg5XPUUBKProhc5k5cHvOd23QNV8lmt0kXdzPCzO8mWFxSQvgE2ueq3Q/s544/Sketch.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="544" data-original-width="432" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJV1KlRoH7BFuzi_7T0Ex1UTWhMdd8ecE9H-DaSJRGMELHYfePQZu9Xm5vTG5XL1IFXYnK5kJmlJ4EtR_rFRhfmqLpbX_j2wgKJaA2FsYlHC3fW8wo9sbpCrbfUjWPO2M3Wmpg5XPUUBKProhc5k5cHvOd23QNV8lmt0kXdzPCzO8mWFxSQvgE2ueq3Q/w159-h200/Sketch.jpg" width="159" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Prep Sketch<br /></td></tr></tbody></table></div><div>Duke met his wife, Laurie, who also has NF in an online chat room for people with neurofibromatosis back in June 2002. Duke was living in Kentucky and Laurie was living in Virginia. After a couple of months of online chatting they met face to face in Tennessee later that summer in August. They were engaged November 2002 and married in Kentucky in July 2003. They decided it was best for Duke to move to Virginia so Laurie could continue to see her NF specialists who keep her as healthy as possible. They do not have children but they share an apartment with their two cats.</div>rmindruphttp://www.blogger.com/profile/07021250508807992265noreply@blogger.com0tag:blogger.com,1999:blog-5959946572199683786.post-39199959569424981372023-01-21T16:47:00.002-06:002023-06-27T12:39:38.468-05:00Case Study #106 - Lesslee Walking for NF Awareness<p></p><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOrlGff1jac6lQib8WjENGT8-3Eh5HxZwDXNB7NvFd-YCGxUnEaWYtAKtAwpWTkwofMtAgemtVZ-eJ7cpgafctSkW1YOiRnWGEUB1YECRoi5BL4htLu6yGwY-hO8GhBIUAVGGWVnxlUTLvw4SHztTQGU5p-HFzEw569rOWYpL19NGWHfhYPu5RGED6cQ/s600/Mindrup_LessleeWalkNF.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="600" data-original-width="480" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOrlGff1jac6lQib8WjENGT8-3Eh5HxZwDXNB7NvFd-YCGxUnEaWYtAKtAwpWTkwofMtAgemtVZ-eJ7cpgafctSkW1YOiRnWGEUB1YECRoi5BL4htLu6yGwY-hO8GhBIUAVGGWVnxlUTLvw4SHztTQGU5p-HFzEw569rOWYpL19NGWHfhYPu5RGED6cQ/w320-h400/Mindrup_LessleeWalkNF.jpg" width="320" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">"Lesslee Walking for NF Awareness" 30" x 24" Oil on Canvas. 2023</td></tr></tbody></table><br /><div>Lesslee has Nuerofibromatosis Type 1 (NF1) and works as a team lead in the deli/bakery department of Walmart in Butler, Missouri. She started there in 2015 and loves her job and coworkers almost as much as she loves a good cup of coffee! Her friends delight in giving her a hard time and reminding her of that very much needed first cup of joe. </div><div><br /></div><div><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5LgMh1RaEDG30bUl7llKzm1aGRP1ZZCxz5pOkShfl3yGMidZum8o2mTsXYXEcZ5Rxnpa43kpKntwP5VhqxfINR3t80Z8Z74slJmMmT6C7qjNG0THC8DnDP_ryv_3DDNxh09x8cpDGCpX_JgPIr1W3h9_sJOduqefMY0AHnZ4VHi1MaKWbo0GVk3S7YQ/s608/Sketch.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="608" data-original-width="496" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5LgMh1RaEDG30bUl7llKzm1aGRP1ZZCxz5pOkShfl3yGMidZum8o2mTsXYXEcZ5Rxnpa43kpKntwP5VhqxfINR3t80Z8Z74slJmMmT6C7qjNG0THC8DnDP_ryv_3DDNxh09x8cpDGCpX_JgPIr1W3h9_sJOduqefMY0AHnZ4VHi1MaKWbo0GVk3S7YQ/w163-h200/Sketch.jpg" width="163" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Sketch for painting</td></tr></tbody></table>She’s is known for her spunky spirit that just might come from her signature red hair or perhaps it is from her desire to not give up or let NF define her. In July 2020, during the height of Covid, she had a very large tumor removed in her leg. It had caused her to limp months prior to the surgery. She had also been on Kuelsugo to help shrink the tumor. Lesslee receives her care at both the Mayo Clinic in Rochester as well as back home. Prior to that surgery she had already had (at least): 4 ultrasounds, 4 different MRI’s (one involved the neck and entire spine) and 3 CT scans. A needle biopsy, tested for covid-19 and blood work (no count) and then the surgery. NF can really take a toll. She’s a proud and involved mom of two energetic and active kids, Samantha and Edmund. Lesslee views motherhood to be the greatest emotional investment of her life. Nobody has made her more proud, happy and full of love than her children have. Her son, Edmund, like herself also has NF1. </div><div><br /></div><div>She enjoys being active with the Children’s Tumor Foundation and being involved in the Shine a Light NF walk held in Kansas City.</div><p></p>rmindruphttp://www.blogger.com/profile/07021250508807992265noreply@blogger.com0tag:blogger.com,1999:blog-5959946572199683786.post-54963321294256805082022-08-01T09:30:00.008-05:002022-08-02T13:11:46.278-05:00Case Study #104 - John Lighting the Stage<div><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUmzvwv3B0zuDNulFOvcoblkdN3Dhdih5L-89JK6myEx43n0T0hP-G7yA9HVegaiWQuxMF-Iwv1jSW4VkmNOc7Pwd9Hu84f7vLVzYG1OmY4bSeb5MlJ89e1IF50zsRNYk6DKSmhDJqK-iHLiBUqY0VuwYMVcivhN4kdJKM0VlvEQ70fK5XImwo56BrRQ/s1855/Mindrup_JohnLightingStage.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1855" data-original-width="1500" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUmzvwv3B0zuDNulFOvcoblkdN3Dhdih5L-89JK6myEx43n0T0hP-G7yA9HVegaiWQuxMF-Iwv1jSW4VkmNOc7Pwd9Hu84f7vLVzYG1OmY4bSeb5MlJ89e1IF50zsRNYk6DKSmhDJqK-iHLiBUqY0VuwYMVcivhN4kdJKM0VlvEQ70fK5XImwo56BrRQ/w324-h400/Mindrup_JohnLightingStage.jpg" width="324" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">"John Lighting the Stage" 30" x 24" Oil on Canvas</td></tr></tbody></table><br />John was diagnosed with neurofibromatosis (NF 1) at birth and is the only one of his parent’s three children to have it. He inherited it from his mother, and she from her father.</div><div><p>As John went through grade school, it was discovered that he required an exceptionally long time to complete his homework, especially assignments that involved a lot of reading or written essay type answers. His learning disability, though perhaps mild, has been present enough that it has always affected him through school, college, and in his working days, all leading to social and career shortcomings. John has a somewhat slower processing speed, trouble learning and remembering new information, and trouble organizing and verbalizing his thoughts. Neuropsychological evaluations have noted findings consistent with diagnosis of a learning disorder.</p><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUOeLvLQ4y0eBW4OBpkJ2-QONDQYV1B_Z8axOM5MsWFxMjmGFp33TQWq6bX83o8usy4AxQm2I8RmawG-6gg_AbVQqKGYz2H_pnjPWdAY34apF-QLRHuUKY1Zm2qtEPQFOKq6dCK1zyv-Bux7GTYNfo7iUEqfvvE6ezhI8_BMKrdhEp6g1RMYt9mF6Oog/s698/JohnLights.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="698" data-original-width="566" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUOeLvLQ4y0eBW4OBpkJ2-QONDQYV1B_Z8axOM5MsWFxMjmGFp33TQWq6bX83o8usy4AxQm2I8RmawG-6gg_AbVQqKGYz2H_pnjPWdAY34apF-QLRHuUKY1Zm2qtEPQFOKq6dCK1zyv-Bux7GTYNfo7iUEqfvvE6ezhI8_BMKrdhEp6g1RMYt9mF6Oog/w162-h200/JohnLights.jpg" width="162" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Prep Sketch</td></tr></tbody></table><p></p><p>In 2005, an MRI revealed a small cystic lesion, likely a pilocytic astrocytoma, in the pons of the brainstem. Though seemingly asymptomatic for years, it warranted follow-up MRIs every 6 to 12 months. Each scan showed about the same as the previous one: very slight growth of the pontine cyst but otherwise unremarkable and no new apparent problems -That was until early 2013.</p><p></p>His neuro-oncologist, Dr. Paul Moots, prescribed two different types of chemotherapy pills that year, followed by radiation treatments in the Spring of 2014. Nevertheless, the cyst continued to expand and by now was compressing onto the brainstem. It was around this time that John began having problems with his balance and difficulty walking. A sensation of tingling numbness that started in his right fingers slowly worked its way up further into his hand; then by late 2014 his right arm, leg, and foot too. A simple task such as picking-up an object or buttoning a shirt became a challenge. His handwriting was now atrocious. He was also beginning to experience double vision. Something more had to be done.<p></p><p>John had two craniotomies at Vanderbilt in the Spring of 2015 to remove the pontine cyst; what his neurosurgeon would describe as “an incredibly complex neurosurgical problem”. This was followed by an intense headache which prompted a third hospital stay and a diagnosis of meningitis.</p><p>NF doesn’t really affect him much in a physical way, at least not in terms of pain, mobility, or appearance. He has some café-au-lait spots and couple other bumps. The double vision in his left field of view remains. There is also a long surgical scar on the backside of his head that can easily be covered-up with hair. His main concern now is in trying to better understand how NF affects him in more cognitive, expressive, and semantic ways or if there is something else at play too.</p><p>For the past 15 years or so, John has volunteered with a local community theater, the Oak Ridge Playhouse. His experience includes over 40 productions, working backstage in any one of a variety of positions: stage manager, assistant stage manager, follow spotlight, light board operator, deck crew, and the props team. John’s favorite position for musical productions is operating one of the spotlights in the theater’s catwalk. From this somewhat-private balcony vantage point, he can contribute directly to the show with the added benefit of viewing the show. He is a self-described “spotlight hog” -only not in the light, but behind it.</p><p>John is appreciative of Rachel Mindrup’s artistic talent and thankful to help shine a light on NF.</p></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1BrgvHavdc-QfyoNNBfGaBS2xNX72Vy-ukaGJbgaJ74mZBx5kiIZCSSu9-S4JDltS2-p6PPD7CU6qScRkTNlepkIV6IeldXJzlKjspWDzFdX1PZU0ZmAB5t18cSHZKrEhZapPKv-4RLOXHth90Av1r2B4zPIPpsKtgxhL2yYfpJ67o3SJ7xeaNV-RMQ/s1855/Mindrup_JohnLightingStage.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1855" data-original-width="1500" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1BrgvHavdc-QfyoNNBfGaBS2xNX72Vy-ukaGJbgaJ74mZBx5kiIZCSSu9-S4JDltS2-p6PPD7CU6qScRkTNlepkIV6IeldXJzlKjspWDzFdX1PZU0ZmAB5t18cSHZKrEhZapPKv-4RLOXHth90Av1r2B4zPIPpsKtgxhL2yYfpJ67o3SJ7xeaNV-RMQ/s320/Mindrup_JohnLightingStage.jpg" width="259" /></a></div><br />rmindruphttp://www.blogger.com/profile/07021250508807992265noreply@blogger.com0tag:blogger.com,1999:blog-5959946572199683786.post-24523374271900736252022-05-07T19:01:00.003-05:002022-12-12T19:29:44.894-06:00Case Study #105 - Elizabeth Enjoying the Kentucky Derby<p> </p><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgZYGVekWW5zjqCDXEUFnp0WinWqetj-bJKpjj943zwJioFCl5PjQFrub2N714R42nsG5NiJLLvH7B2RP14FhuqK6OnxZ0qmT78xZ05ce0hIsRPDI4bUwZOwzdiwxY4FNmodfIBqjGw21F2gdDloeB_yEtHFxmITzoeRPgPF4BjP29JwsKOEF9wN4mI9g/s1866/Mindrup_ElizabethKDerby.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1866" data-original-width="1500" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgZYGVekWW5zjqCDXEUFnp0WinWqetj-bJKpjj943zwJioFCl5PjQFrub2N714R42nsG5NiJLLvH7B2RP14FhuqK6OnxZ0qmT78xZ05ce0hIsRPDI4bUwZOwzdiwxY4FNmodfIBqjGw21F2gdDloeB_yEtHFxmITzoeRPgPF4BjP29JwsKOEF9wN4mI9g/w321-h400/Mindrup_ElizabethKDerby.jpg" width="321" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">"Elizabeth Enjoying the Kentucky Derby" 2022. Oil on Canvas. 30" x 24"</td></tr></tbody></table><p></p><div class="j83agx80 buofh1pr g5gj957u hpfvmrgz" data-testid="message-container" role="none" style="background-color: white; color: #1c1e21; display: flex; flex-grow: 1; flex-shrink: 1; font-size: 15px; min-width: 0px;"><div class="ns4p8fja j83agx80 cbu4d94t a6sixzi8 bkfpd7mw nred35xi a1xu1aao" role="none" style="align-items: inherit; align-self: stretch; background-color: var(--messenger-card-background); display: flex; flex-direction: column; justify-content: flex-end; max-width: calc(100% - var(--mwp-message-list-actions-width,62px) - 5px);"><div class="j83agx80 k4urcfbm" role="none" style="display: flex; width: 588px;"><div class="ll8tlv6m j83agx80 cbu4d94t d2edcug0 l9j0dhe7" style="align-items: flex-start; display: flex; flex-direction: column; max-width: 100%; position: relative;"><span class="tojvnm2t a6sixzi8 abs2jz4q a8s20v7p t1p8iaqh k5wvi7nf q3lfd5jv pk4s997a bipmatt0 cebpdrjk qowsmv63 owwhemhu dp1hu0rb dhp61c6y iyyx5f41" style="align-items: inherit; 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--toggle-active-text: rgb(24, 119, 242); --toggle-button-active-background: #E7F3FF; --warning: hsl(40, 89%, 52%); --wash: #E4E6EB; --web-wash: #F0F2F5; box-sizing: border-box; position: relative; z-index: 0;"><p style="font-size: 0.9375rem; line-height: 20px; text-align: left; white-space: pre-wrap;"><span style="font-family: times;">Elizabeth Keller is from Louisville Kentucky. She was born with NF and inherited it from her biological mother. She was adopted at six weeks old. Over the years, Elizabeth has had 5 surgeries to remove some of the painful tumors. One surgery was when she was a toddler to remove a tumor in her groin area, twice when she was 13 to remove tumors on her knee that grew back and at 16 to remove some tumors on her back and arms. Besides tumors, NF causes migraines. Some of her tumors are very painful even to the touch. Because she was adopted did not know anyone else with NF until she became and adult and found various Facebook communities.<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEig9Jp4xAl-d5MvUkXAscg-Oz9LfctJ9y2jnQU0YGBcqUU1uO7dsl3UxS0ocmMntOWapnpRii__lIwOsATJtiqGQhp70f0m1S3hIRSzJ5SpCJFLsdJEt4lpK1GcsdLimm9FHizWeF3PzEvraL6ZaWqSEXMaIVjyMcwDqtDqEe9VzltwUyCqUm-v8zLO9Q/s752/sketch.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="752" data-original-width="624" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEig9Jp4xAl-d5MvUkXAscg-Oz9LfctJ9y2jnQU0YGBcqUU1uO7dsl3UxS0ocmMntOWapnpRii__lIwOsATJtiqGQhp70f0m1S3hIRSzJ5SpCJFLsdJEt4lpK1GcsdLimm9FHizWeF3PzEvraL6ZaWqSEXMaIVjyMcwDqtDqEe9VzltwUyCqUm-v8zLO9Q/w166-h200/sketch.jpg" width="166" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Prep Sketch</td></tr></tbody></table></span></p><p style="font-size: 0.9375rem; line-height: 20px; text-align: left; white-space: pre-wrap;"><span style="font-family: times;">Raising NF awareness is important to Elizabeth because she wants the unaffected population to realize that it is a genetic disorder not a contagious disease. She has had many hurtful stares, people pointing and saying hurtful things to her. Her boyfriend and her son, who does not have NF, continue to be her strength to persevere. She has participated twice in the Cupid's Undie Run held in Louisville, Kentucky and was the 1st place individual winner for highest fundraiser one of the years. In her free time, Elizabeth loves to create realistic zombie make up and costumes and show them off during Halloween.</span></p></div></div></div></span></div></div></div></div>rmindruphttp://www.blogger.com/profile/07021250508807992265noreply@blogger.com0tag:blogger.com,1999:blog-5959946572199683786.post-38701470543504743432021-08-07T15:59:00.004-05:002021-08-09T20:04:32.144-05:00Case Study #103 - Mark Petting Misty<br /><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhG10XmF7S16qwu9UJ1k0X_5ptNhOjaHGarya-reKb6irK1ATiYvwJDkEfdDSo_Jne_YpSuwVVErVMKSdzkkBPukRDDPrmqCPqow_WlNpFWUfrTCCffRgEi0wQfTpfe29y__Eyv7xwGLEAt/s620/Mindrup_MarkPattingMisty.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="620" data-original-width="500" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhG10XmF7S16qwu9UJ1k0X_5ptNhOjaHGarya-reKb6irK1ATiYvwJDkEfdDSo_Jne_YpSuwVVErVMKSdzkkBPukRDDPrmqCPqow_WlNpFWUfrTCCffRgEi0wQfTpfe29y__Eyv7xwGLEAt/w323-h400/Mindrup_MarkPattingMisty.jpg" width="323" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">"Mark Petting Misty" Oil on Canvas. 2021. 30" x 24"</td></tr></tbody></table><br />Mark's NF diagnosis came about through an unusual way. He had twisted an ankle pretty good and stopped in at his doctor's office to see if he could get in. He’d known for years something was going on with his body but his doctor couldn’t pin down what it was. The administrative secretary's nephew had come for a visit and stopped by the office to just say hi that same morning. He had a more severe case of NF and his doctor immediately made the connection. He came into the exam room where Mark was sitting and said “I know what you have.” Mark was dubious thinking “Yeah, a bent foot.” That was the day he received his diagnosis.<div><br /></div><div><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJ73MXxDpZcxPydWhwmzfryLxIxbNW96hgFnoSnxpExbKy19opR3YHDzZV4RM5GBDWKEZAITtO-gXEDC4I9uNPMQqp-39aFRt5eZZy02H4bB1YHXcdxuBtn1mslSRKFMsHTXFbCVSogr2T/s552/MarkwithDog.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="552" data-original-width="446" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJ73MXxDpZcxPydWhwmzfryLxIxbNW96hgFnoSnxpExbKy19opR3YHDzZV4RM5GBDWKEZAITtO-gXEDC4I9uNPMQqp-39aFRt5eZZy02H4bB1YHXcdxuBtn1mslSRKFMsHTXFbCVSogr2T/w162-h200/MarkwithDog.jpg" width="162" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Prep Sketch for "Mark Playing with his Dog"</td></tr></tbody></table>NF didn’t bother Mark much for quite a while. He was able to be real active in Search and Rescue for twenty years but did have to give that up as things with his NF progressed. Mark is one of the lucky few with NF2 who are fairly mildly affected. NF has taken far too many of his friends. He can still do most of what he wants, just some slower, but overall life is good.<br /><br />Mark's connection with NF goes well past his own diagnosis. Mark met <a href="https://rmindrup.blogspot.com/2021/02/case-study-96-marcy-decorating-tree.html" target="_blank">Marcy</a> and <a href="https://rmindrup.blogspot.com/2021/01/case-study-94-jay-never-giving-up.html" target="_blank">Jay</a> on an NF bulletin board years ago. This mother and son also had NF and the three of them became online friends. After a few years of Mark complaining about the winter they invited him down for a visit. They all hit it off and it became a yearly tradition. Two days before Mark's 2019 visit Marcy called and informed him that Jay was in the emergency room with a suspected stroke. Mark responded immediately and got his flight changed and came down the next day. When he got there they were transferring Jay to another hospital where he was diagnosed with the GBM tumor. Mark's three day visit turned into a three week visit while Jay had surgery and began his rehabilitation. Jay asked Mark if he’d stay and help his mom care for him. When Jay was stable enough Mark flew home and loaded up his car and came back. Jay had lots of doctor visits as well as home care professionals. Just short of a year after diagnosis the family lost him. One of the last things, Jay made Mark promise was that he’d stay and watch over his mom. He was more worried about her than himself. It was easy for Mark to say yes. The three of them all got along so well that Mark feels like they are family. Although Mark never wanted to have kids from the time he met Jay, he’d have been proud to call Jay his son. In Mark's words, "I can’t describe how great a person Jay was."<br /><br />As to Mark's NF2 diagnosis, for a lot of years it was thought to be NF1 until his acoustic neuromas finally got big enough to identify as such. They’d shown up on MRI’s for some time but were too small to identify as such. They still real small as of my last one so I’m happy to leave them alone as long as they don’t bother me too much.</div>rmindruphttp://www.blogger.com/profile/07021250508807992265noreply@blogger.com1tag:blogger.com,1999:blog-5959946572199683786.post-39947963965244794342021-06-11T21:14:00.006-05:002021-08-04T14:48:02.657-05:00Case Study #100 - Robby Broadcasting Hockey<p></p><p></p><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5sEpD3y2MXPkQOou08iwcCruzPTXSF3VHkayvxTl27y6v8kz7FPDGfojNOZ5qkHDqOnACS-1uMb4kj9ixdTteVRTf53ZyBjTdXxA7JaVIrNwYaFpye1THPl4e7kPgJ6zfZ7M7ovzOySON/s625/Mindrup_RobbyBroadcastingHockey.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="625" data-original-width="500" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5sEpD3y2MXPkQOou08iwcCruzPTXSF3VHkayvxTl27y6v8kz7FPDGfojNOZ5qkHDqOnACS-1uMb4kj9ixdTteVRTf53ZyBjTdXxA7JaVIrNwYaFpye1THPl4e7kPgJ6zfZ7M7ovzOySON/w320-h400/Mindrup_RobbyBroadcastingHockey.jpg" width="320" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Robby Broadcasting Hockey - 2021 Oil on Canvas. 30" x 24"</td></tr></tbody></table><br />Robby was diagnosed with NF at birth, passed on genetically from their mother. Robby is the third child of four children. The eldest sibling in the family also has NF as well. Robby didn't really understand it until they regularly started to have scheduled MRI's at around 6 years old. Throughout late elementary school to middle school, Robby was continually bullied for being different. Robby had a big head, was unathletic, had short stature, among other issues. The bullying ended when they became more open about their life with NF and decided to raise awareness. They did this by running a half marathon at 13 years old in the 8th grade. Through that, Robby had a boost in confidence that helped them get through the high school years at Bellarmine College Prep in San Jose, CA. After high school, Robby went on to study broadcast journalism at the University of Arizona in Tucson, AZ. <div><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCQMl7l5XMdY5Lf1gfCccBCdDxgU6mxFC3Ye9_oRNDnaj5vSGP0kBg5ES2jk-x8FqxMNGAcMUYKiE5NMFhL1jNHTwhjWG5yBR0O_J9F4s0vmkBH3MfLMggPaLc6n0Dxho9ufblxV6DSdvZ/s692/Robby.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="692" data-original-width="542" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCQMl7l5XMdY5Lf1gfCccBCdDxgU6mxFC3Ye9_oRNDnaj5vSGP0kBg5ES2jk-x8FqxMNGAcMUYKiE5NMFhL1jNHTwhjWG5yBR0O_J9F4s0vmkBH3MfLMggPaLc6n0Dxho9ufblxV6DSdvZ/w157-h200/Robby.jpg" width="157" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Prep Sketch</td></tr></tbody></table><br /></div><div>Robby is now a digital producer for KCUB-AM, Wildcats Radio 1290, as well as a podcast host for the Locked on Podcast Network, covering the Arizona Coyotes. To this day, Robby and his family continue to be open and spread awareness about NF, and while the family doesn't participate in many races anymore, they are still a big part of the community and are open to sharing their experiences with others.<p></p></div>rmindruphttp://www.blogger.com/profile/07021250508807992265noreply@blogger.com0tag:blogger.com,1999:blog-5959946572199683786.post-42511879940570842972021-06-07T19:38:00.010-05:002021-06-11T15:10:31.077-05:00Case Study #102 - Paul Playing Ball with his Kids<div><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjg5nvbVFDN7Frk7stUoTPvjqI-ec0JrDlZWYSinAcj5Q1FDBT6zF9gYWlbUIv_f6LuYKtHTBUekCoJtiTIQHsSgXWi6b9kb6tBZB-SgE98ty3mV897Cl7MKOybSf4_NW_MRQeV41zqU_-2/s1861/Mindrup_PaulPlayBall.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1861" data-original-width="1500" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjg5nvbVFDN7Frk7stUoTPvjqI-ec0JrDlZWYSinAcj5Q1FDBT6zF9gYWlbUIv_f6LuYKtHTBUekCoJtiTIQHsSgXWi6b9kb6tBZB-SgE98ty3mV897Cl7MKOybSf4_NW_MRQeV41zqU_-2/w323-h400/Mindrup_PaulPlayBall.jpg" width="323" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">"Paul Playing Ball with his Kids" Oil on Canvas. 30" x 24"<br /><br /></td></tr></tbody></table>Paul Patterson wasn’t diagnosed with Neurofibromatosis Type II (NF2) until he was 33 years old. However, his story is proof that God has a plan for each of us. Paul and his wife, Jessie, started dating when they were in college. At that time, Jessie was an Elementary Education major; however, she changed majors and stumbled across the field of audiology. She continued to graduate school and while she was running research subjects, she diagnosed Paul’s bilateral vestibular loss. Because he had normal hearing, no imaging was recommended. It was not until Paul was 30 when Jessie started to notice some hearing difficulty, which to her surprised revealed some significant hearing loss in both ears. One year later, Paul was participating in a hearing research study and he found out that the hearing loss in the right ear changed significantly. He finally agreed to an MRI, which revealed bilateral vestibular schwannomas, with the growth on the right being significantly larger than the left side. His neuro-otologist at Boys Town referred to the University of Iowa for management of the NF2.<span face=""Segoe UI Historic", "Segoe UI", Helvetica, Arial, sans-serif" style="background-color: #e4e6eb; color: #050505; font-size: 15px; white-space: pre-wrap;">
</span>Two months after his diagnosis, he met with physicians at the University of Iowa to discuss treatment options. Given the size of the schwannoma on the right side and a growth they found on his spine, surgery was recommended sooner rather than later. Especially because they were expecting their second child in 4 months. One month later, he had a tumor resection from the right 8th cranial nerve and just five days later they removed the calcified myngioma on T7. Timing could not have been better; Paul was discharged from the hospital just a week before everything started to shut down due to COVID-19. He was also able to recover at home with Jessie and 3-year-old daughter, Alexa before the arrival of their baby boy, Miles. Paul started receiving Avastin treatments every three weeks with the goal to preserve the hearing on the left side and slow any other growths along the central nervous system. He also had an Auditory Brainstem Implant (ABI) placed at the time of the tumor resection in case he does lose the hearing on the left.<span face=""Segoe UI Historic", "Segoe UI", Helvetica, Arial, sans-serif" style="background-color: #e4e6eb; color: #050505; font-size: 15px; white-space: pre-wrap;">
</span><br /><div><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzy0g02OeFMhL9wTG65qzH8afZxbiD8E8s06Fbu0z2Xem3V5KorWxjE44dHAc75MxQiDM-R5uuX4-_F1S6pUyYs9QYviAUZcLMl88pbmPTQdEn-Hb2aKuGnEY4BEFW-HSenZUuhVXvZxS_/s610/PaulPlayingKids.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="610" data-original-width="502" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzy0g02OeFMhL9wTG65qzH8afZxbiD8E8s06Fbu0z2Xem3V5KorWxjE44dHAc75MxQiDM-R5uuX4-_F1S6pUyYs9QYviAUZcLMl88pbmPTQdEn-Hb2aKuGnEY4BEFW-HSenZUuhVXvZxS_/w164-h200/PaulPlayingKids.jpg" width="164" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Prep Sketch</td></tr></tbody></table> Since his surgeries, Paul deals with daily pain from the back surgery, as well as pain along his right leg due to nodules on the right sciatica nerve. The nodules on the sciatic nerve are also causing worsening of his drop foot. He wears an AFO to help with the drop foot, but combined with his bilateral vestibular loss, he has a difficult time with his balance. Paul is resilient and rarely lets his diagnosis bring his spirits down. He values his family more than anything, so he doesn’t let his challenges get in the way of spending quality time with his family. The kids love to be outside and play sports, so he cherishes these moments because he knows that this is something that he might not be able to do when they get older. Genetic testing also revealed that both Alexa and Miles have the same genetic mutation.<span face=""Segoe UI Historic", "Segoe UI", Helvetica, Arial, sans-serif" style="background-color: #e4e6eb; color: #050505; font-size: 15px; white-space: pre-wrap;">
</span>Paul and Jessie know that God has a bigger plan for them. Paul always has the best attitude about everything, and they know that will allow him to be a great role model for the kids, as well as other individuals diagnosed with NF. So far, Paul’s journey has been short with NF2, but he is anxious to help make a difference in treatments. Paul and Jessie are organizing the first #NFStrong walk in Omaha, NE to help raise funds to support NF research. They hope that with continued research, treatment can advance so that Paul, the kids, and others can live a long and fulfilling life doing what they love. In Paul’s case, that is playing sports with his kids.<p></p></div></div><br />rmindruphttp://www.blogger.com/profile/07021250508807992265noreply@blogger.com0tag:blogger.com,1999:blog-5959946572199683786.post-77513512646505978742021-05-30T20:50:00.002-05:002021-06-07T14:30:56.780-05:00Case Study #101 - Sidney Relaxing by the Fire Pit<div class="separator"><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQZCFbkSGvRcjR6CZV7KQyurWJJXR3lruhVHbuhMEub9WGu-hnwryoQv5alrZAxhG3vq1XITT8dq5rSQZadyaNfQBCRrN1ikCfNFgBYcuZFNhMHFP7GVe8Ds8N6DElJPFHsQg3PWBX4CmA/s1863/Mindrup_SidneyFirePit.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1863" data-original-width="1500" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQZCFbkSGvRcjR6CZV7KQyurWJJXR3lruhVHbuhMEub9WGu-hnwryoQv5alrZAxhG3vq1XITT8dq5rSQZadyaNfQBCRrN1ikCfNFgBYcuZFNhMHFP7GVe8Ds8N6DElJPFHsQg3PWBX4CmA/w323-h400/Mindrup_SidneyFirePit.jpg" width="323" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">"Sidney Relaxing by the Fire Pit" Oil on Canvas. 30" x 24" 2021.</td></tr></tbody></table><br /></div><div class="separator">Sidney was born with five to six Café au lait spots and by the time her parents left the hospital with her she had over twenty. Thankfully, she did not have any learning disabilities growing up. Her parents kept her active in ballet, tap dance and gymnastics to help with strength and endurance. Sidney had her first surgery at 15 years old followed by nearly one surgery every three years. Later on, Sidney was diagnosed with Malignant Peripheral Nerve Sheath Tumor (MPNST) a form of cancer of the connective tissue surrounding nerves. Given its origin and behavior it is classified as a sarcoma. Sidney had resection/radiation to her right lung in 2009. Nine years later, she then then had surgery to her left lung. In 2019, she had surgery to her right lung again, but this time along with radiation. She is now on her fourth concoction of chemotherapy. She been treated in Omaha, Phoenix and Rochester.</div><div><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjm6fXIc7w5WaN1f8CA9iWJgGYWbth4ij-5lexHEY2MZUxDj7MWN8AnBWR_YnB-vrgnEui3OBwLDbs2W76nJMV6SjdOc4oCRheAtiGtvC2F5POhoLufeldST-UV7ySTgPtHmFdBV7UTd0y0/s523/SydneyFirePit.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="523" data-original-width="419" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjm6fXIc7w5WaN1f8CA9iWJgGYWbth4ij-5lexHEY2MZUxDj7MWN8AnBWR_YnB-vrgnEui3OBwLDbs2W76nJMV6SjdOc4oCRheAtiGtvC2F5POhoLufeldST-UV7ySTgPtHmFdBV7UTd0y0/w160-h200/SydneyFirePit.jpg" width="160" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Prep sketch for Sidney</td></tr></tbody></table><br />Sidney currently works in the Papillion LaVista school district working one on one with special needs children. Sidney stays on top of NF/sarcoma research and follows a lot trending research on social media. She was never comfortable in her skin growing up, but now that she has a seven year old daughter who was diagnosed with NF1 at 4 months old she has come to love herself and she teaches her daughter to embrace her body. Sidney teaches her daughter that, "We are both are special and that our bodies are beautiful."<br /><br /></div><br />rmindruphttp://www.blogger.com/profile/07021250508807992265noreply@blogger.com0tag:blogger.com,1999:blog-5959946572199683786.post-9393359231471739722021-04-20T14:47:00.002-05:002021-06-03T18:37:52.929-05:00Case Study #99 - Bea Selling Raffle Tickets<div style="text-align: center;"><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhb6IwXEwN5PSiXhK-T87G9zidJCvmvg1OxOnoYTqgqy_EUAmsjjn5JJJqcoXo4pRobJQQ0QflI0KRpeD49OSFcmfCUuz9buCZJNvZnsI0wCLt7UoOpF_j8oAY5xIjK27C_3gyVkM1jNTet/s1860/Mindrup_BeaSellingRaffleTickets.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1860" data-original-width="1500" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhb6IwXEwN5PSiXhK-T87G9zidJCvmvg1OxOnoYTqgqy_EUAmsjjn5JJJqcoXo4pRobJQQ0QflI0KRpeD49OSFcmfCUuz9buCZJNvZnsI0wCLt7UoOpF_j8oAY5xIjK27C_3gyVkM1jNTet/w323-h400/Mindrup_BeaSellingRaffleTickets.jpg" width="323" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">"Bea Selling Raffle Tickets" Oil on Canvas. 2021. 30" x 24"</td></tr></tbody></table><br /><div class="separator" style="text-align: justify;">Bea Swafford inherited her NF from her mother whose NF was due to a spontaneous gene mutation. She died at only 40 years of age leaving six children under the age of 10, two of whom had NF. Bea believes her death was due to NF complications. Bea's dad remarried right away and the family started seeing her stepmother's son's pediatrician who referred her and her 'bad leg' to Seattle Children's Hospital for evaluation. That happened in October, 1970. Bea had many tumors in her left thigh and a bowed tibia. In the beginning, the doctors just wanted to amputate her entire leg but the wrath of her step mom was greater than their limited knowledge. Bea wore an ankle brace until they could find a way to fix her bowing leg. She was 8 years old. April 11, 1972 was the big day and I was in the hospital until the end of May.</div></div><div><div class="separator" style="clear: both; text-align: center;"><br /></div>In 1972 and during Halloween, Bea had the mass of tumors removed from her thigh. JP Patches, a clown from TV, came to visit us not just Bea, but all the kids in the ward! Shortly after Christmas of 1973 Bea had a second tibia fix.<br /><br /></div><div>In between all the surgeries and numerous doctor visits, Bea was an 'average' child with good grades, busy in her church. She truly loved being with her siblings. She made it through high school with only one surgery which was to remove a mass of tumors on her ovary and abdominal cavities. </div><div><br /></div><div>After graduation, Bea lived on her own, worked and learned about adult life After a few office jobs, she started working at a steak house where she met her future husband, Phillip. They have been married for over 30 years and have an adult son (who does not have NF) Nolan.<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjke-Mkmmbg_dd00g6tMf5DSQK95NHKEvA180Szn5z-MnIcruAk1Y4-MIXqheYUiCOMt-iNDAmiykifq1Srr8fmapY1_h1bFgg8FO6SHxySaZVbJ94o_LmYwit1cWdvHNaGAn7TKjbTAYm-/s592/BeaTakingTickets.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="592" data-original-width="474" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjke-Mkmmbg_dd00g6tMf5DSQK95NHKEvA180Szn5z-MnIcruAk1Y4-MIXqheYUiCOMt-iNDAmiykifq1Srr8fmapY1_h1bFgg8FO6SHxySaZVbJ94o_LmYwit1cWdvHNaGAn7TKjbTAYm-/w160-h200/BeaTakingTickets.jpg" width="160" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Prep Sketch for Bea <br />Selling Raffle Tickets</td></tr></tbody></table></div><div><br /></div><div>Back in 1994, Bea had a C-spine surgery due to her NF. It nearly paralyzed her. Her hair was past her shoulder blades and her dominant arm had 'shut-down' with the hair as a tangled mess. She had a hair-dresser friend come cut it and wanted to donate it, but it couldn't be untangled. Bea set a goal that if her hair were to grow after the trauma (at neck) and if her arm would work to comb it, she would grow it to her knees then donate it. It took 10 years and 10 months and she was able to donate a 39" braid. Since April of 2010, Bea has donated 96" to Wigs4Kids. This upcoming May 2021, Bea will have her second C-spine surgery.</div><div><br /></div><div>Bea is very active on social media and tries to share various NF postings from different NF charities. She tries to remind people to "Be Positive!"<br /><br />On the day I finished Bea's portrait, she passed away due to NF complications. She had gone in to have some tumors removed from her lungs when the lungs collapsed. She was intubated and put into hospice. </div><div><br /></div><div><br /></div><br />rmindruphttp://www.blogger.com/profile/07021250508807992265noreply@blogger.com0tag:blogger.com,1999:blog-5959946572199683786.post-30327808007827528042021-03-25T13:17:00.008-05:002021-06-28T19:35:35.725-05:00Case Study #98 - Keith Thinking about Life<p></p><div style="text-align: justify;"><span style="text-align: left;"><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGjnDRzHP-ERJ7tO3QdksMWhFleXPbzDnE7CqjtQblovIxoBbkKMU_SpEKJeKszk11BYafObtvoyxh3YGE0ibV_A_nSKr_OgBuJxMMOzjU6FQPyykOmP2smtEqGFpcrPVJPFbRXOMIfiPr/s1846/Mindrup_KeithEnjoyingLife.jpg" style="margin-left: auto; margin-right: auto; text-align: center;"><img border="0" data-original-height="1846" data-original-width="1500" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGjnDRzHP-ERJ7tO3QdksMWhFleXPbzDnE7CqjtQblovIxoBbkKMU_SpEKJeKszk11BYafObtvoyxh3YGE0ibV_A_nSKr_OgBuJxMMOzjU6FQPyykOmP2smtEqGFpcrPVJPFbRXOMIfiPr/w325-h400/Mindrup_KeithEnjoyingLife.jpg" width="325" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">"Keith Thinking about Life" Oil on Canvas. 30" x 24"<br /><br /></td></tr></tbody></table>Keith Jones was diagnosed at 8 years old due to his mother noticing a few fibromas on his chest. Keith is not sure of his biological dad's background or that side of his family so he isn't sure if his NF is spontaneous or inherited from that side. He and his brother grew up with a stepfather who was in the military which meant traveling and living in new places including Guam, Utah, North Carolina, Virginia, Arkansas and lastly Arizona where he currently lives now.<div style="text-align: justify;"><br /></div></span></div><p></p><p></p>Keith graduated in 1988 and worked in a warehouse for years before he got his commercial driver's license. He has been an over the road driver for more than twenty years now. He has three children, two boys and a girl. The two boys, now teenagers, both have NF and the daughter seems to have signs, but no formal diagnosis. Over the years he has had a few fibromas removed and has most of them concentrated in his trunk area and back. Keith receives his care at Thunderbird Family Medicine and Valley Wise Health. Even with some of the minor surgeries, Keith feels fortunate to not have had many surgeries nor the bullying that others with NF have endured. He considers himself blessed.<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiGVR0TB8wRibFNafIUGpakfDucszCY2aYoekVM17aiDgVOASZ9pmsDcQnXNb3qRgogQIlBTdB9s8kVR1KQQOxReR8PfnTwiztoz__ktdzArNNTipvZMKHgynJiVyaBoYhVlnx1Dm4gbdOi/s597/KeithThinkingLife.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="597" data-original-width="470" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiGVR0TB8wRibFNafIUGpakfDucszCY2aYoekVM17aiDgVOASZ9pmsDcQnXNb3qRgogQIlBTdB9s8kVR1KQQOxReR8PfnTwiztoz__ktdzArNNTipvZMKHgynJiVyaBoYhVlnx1Dm4gbdOi/w158-h200/KeithThinkingLife.jpg" width="158" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">"Keith Thinking about Life" prep sketch</td></tr></tbody></table><p></p>Keith is looking to be more active in the NF community in Phoenix. In Keith's words, "I don't live with NF. NF lives with me it is what makes me stronger & more compassion towards other elements of life."<div><br /></div><div></div>rmindruphttp://www.blogger.com/profile/07021250508807992265noreply@blogger.com0tag:blogger.com,1999:blog-5959946572199683786.post-43463278080619279312021-03-14T17:01:00.002-05:002021-09-23T14:38:42.543-05:00Case Study #97 - Seth Playing the Piano<p> <table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaGFqLBitNFev78_zHYE6lvalFnGnddaZ_81Bbnu5AndHUejd7t9JziQdsp83h4vWIVHsSKNrjDjatqX2lhmICaKB0lfvlV_WtkHoB_87xPucA5L_cGZFEr5bg02Y4yPkQR_RZU09t1Mv7/s600/Mindrup_SethPlayingPiano.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="600" data-original-width="470" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaGFqLBitNFev78_zHYE6lvalFnGnddaZ_81Bbnu5AndHUejd7t9JziQdsp83h4vWIVHsSKNrjDjatqX2lhmICaKB0lfvlV_WtkHoB_87xPucA5L_cGZFEr5bg02Y4yPkQR_RZU09t1Mv7/w314-h400/Mindrup_SethPlayingPiano.jpg" width="314" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">"Seth Playing the Piano" Oil on Canvas. 30" x 24" 2021.</td></tr></tbody></table></p>Seth Gregorash is in his early 20s and was diagnosed with Neurofibromatosis (NF1) when he was 6 months old. He was born with a bowed leg, which an x-ray revealed to be caused by Pseudarthrosis; a condition that affects the strength of the bones and their ability to heal. This required him to wear a brace throughout his childhood to protect his tibia from breaking. As he grew, cafe au lait marks began to appear on his body. These “birthmarks” are another symptom associated with NF that helped the doctors confirm the diagnosis. <div><br /></div><div><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfsb3_ZSo2CUMYjOO8I4nTZrFE5wGP0ZHCyrbG9AUv72PLYgSrYaCojtow1A_P_Cm3tmwKGhEba8A1uFMmFiiv3bLDsvEopNrxIQ7CRFK8cEYCzQad-ssFNclxOCbRLZG6s-Wedxg-1Ew6/s484/SethPiano.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="484" data-original-width="400" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfsb3_ZSo2CUMYjOO8I4nTZrFE5wGP0ZHCyrbG9AUv72PLYgSrYaCojtow1A_P_Cm3tmwKGhEba8A1uFMmFiiv3bLDsvEopNrxIQ7CRFK8cEYCzQad-ssFNclxOCbRLZG6s-Wedxg-1Ew6/w165-h200/SethPiano.jpg" width="165" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Prep Sketch</td></tr></tbody></table>Seth’s parents were actively involved in learning about NF and helped him grow up to understand the challenges he may face. In 2007, his family helped start a registered charity support group for Manitobans with NF. Throughout his school years Seth had to take many long trips to doctor appointments and for MRIs to monitor the growth of the plexiform tumor in his chest. This caused him to miss many things like friend’s birthday parties, and made it difficult to participate in events like choir and band concerts. At first Seth enjoyed the “limelight” of being a bit of a celebrity for NF, but as he got older he became more overwhelmed with the inconveniences of NF and just wanted to live a normal life like his friends. </div><div><br /></div><div>Seth is a very kind person who will always go out of his way to help those in need. He enjoys graphic design and web development and has graduated from college in this field. With a natural ear for music he is drawn to anything to do with rhythm and sound. He has been playing piano most of his life, played trumpet in the high school band and enjoys “dabbling” in other instruments like guitar and ukulele.<p></p></div>rmindruphttp://www.blogger.com/profile/07021250508807992265noreply@blogger.com0tag:blogger.com,1999:blog-5959946572199683786.post-57494559703054685032021-02-11T17:02:00.003-06:002021-02-26T16:20:41.541-06:00Case Study #96 - Marcy Decorating the Tree <p><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiuhWMTniSHjX1p6_JNIp8D9xP8lkv_udk5Iz01T1oTQcbMaEMSHE5df1-yOkuTUpovzXx10Hl5fcuuIlBM1pqARDVgYP4nHu5y2KMS7gLn7ke0ZtXO25P7CfxSGDiaN0ZSfuMNGJ01ZBjg/s622/Mindrup_MarcyDecoratingTree.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="622" data-original-width="500" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiuhWMTniSHjX1p6_JNIp8D9xP8lkv_udk5Iz01T1oTQcbMaEMSHE5df1-yOkuTUpovzXx10Hl5fcuuIlBM1pqARDVgYP4nHu5y2KMS7gLn7ke0ZtXO25P7CfxSGDiaN0ZSfuMNGJ01ZBjg/w321-h400/Mindrup_MarcyDecoratingTree.jpg" width="321" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">"Marcy Decorating the Tree" Oil on Canvas. 2021</td></tr></tbody></table></p><p></p><div>When Marcy was 9, she was diagnosed with Von Recklenhausen which later was renamed to Neurofibromatosis. She didn't really know what it meant as a child and the impact of it didn't materialize until her son, Jay, was diagnosed with NF. Growing up as an only child, she paid attention to what the boys were interested in which gave her a vast knowledge of the various superheroes and comic book characters. </div><div><br /></div><div>Marcy graduated from ASU in 1980 with with a dual major in education; elementary and special education. Marcy taught special education for 4 years, kindergarten for 4 years and fifth grade for 5 years. The remaining twenty-two years were in third grade. She taught in the Paradise Valley United School District in Phoenix.</div><div><br /></div><div style="text-align: left;"><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEisFVeuoN4XluBVmdNDYGO69Z02NAXRtj44g-1-A8wRRHX01mLJzmvdG0ToATxr2sJiSKzfAljXH5G5cw2__aOwAkveoJjuDOQGNwW0WJlKyix8M6_Fcn7AsLCtAEbzUAmYRSf0ks0EQhJO/s595/MarcyTree.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="595" data-original-width="471" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEisFVeuoN4XluBVmdNDYGO69Z02NAXRtj44g-1-A8wRRHX01mLJzmvdG0ToATxr2sJiSKzfAljXH5G5cw2__aOwAkveoJjuDOQGNwW0WJlKyix8M6_Fcn7AsLCtAEbzUAmYRSf0ks0EQhJO/w158-h200/MarcyTree.jpg" width="158" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Marcy Decorating the Tree</td></tr></tbody></table>It wasn't until Marcy became pregnant with her son Jay that she began to notice the affects of NF. Small bumps began to grow during the pregnancy and continue to grow now. She has to wonder if her lack of find motor skills and athletics was also due to NF. Marcy also has epilepsy along with her NF and has had many seizures over the years as well due to epilepsy. When her son Jay was born, he has some outward manifestations of NF that caught the attention of Pat Collins who was the leader of the Phoenix Chapter for NF which was called NF Inc. Now it is called NF Network. Marcy and Jay were both involved in various fundraising and awareness campaigns during that time with this group. Also during the 80's, Marcy was active in raising NF awareness through this group as well as the Order of the Eastern Star (one of the Masonic family groups).</div><div><br /></div><div>In 2015, Marcy and Jay attended the CTF NF forum in Scottsdale and were able to meet other families and people living with NF. Jay passed away from his brain tumor due to NF in 2020 and Marcy was able to donate his body and brain to continue NF research as his legacy.</div>rmindruphttp://www.blogger.com/profile/07021250508807992265noreply@blogger.com0tag:blogger.com,1999:blog-5959946572199683786.post-60648838815534120412021-01-23T17:23:00.002-06:002021-03-08T14:08:25.163-06:00Case Study #95 - Ricky Preserving Liberty<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiebJE350wnUTdqUWysJcH1hyv_wYSIvO4H6XYeM66cxu1hwmG9DyqCp3EQ518lAQFMfTh4G6XCQ0IQzCnGknCH83SZ3Ja1_0iIAtC3kw8iTuFGle2U1jMOsngEQNMjFjTnTHXFOdLnAhpV/s1863/Mindrup_RickyLiberty.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1863" data-original-width="1500" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiebJE350wnUTdqUWysJcH1hyv_wYSIvO4H6XYeM66cxu1hwmG9DyqCp3EQ518lAQFMfTh4G6XCQ0IQzCnGknCH83SZ3Ja1_0iIAtC3kw8iTuFGle2U1jMOsngEQNMjFjTnTHXFOdLnAhpV/w323-h400/Mindrup_RickyLiberty.jpg" width="323" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">"Ricky Preserving Liberty" Oil on Canvas. 2021</td></tr></tbody></table><br /><div class="separator">Ricky was diagnosed with NF1 at just six weeks old. When he was a child he was a poster child for the then Massachusetts Chapter of the National Neurofibromatosis Foundation. While his symptoms aren’t as obvious as others he has had his struggles too. He spent years in speech, occupational, and physical therapy to help with speech and motor issues. While in high school some of his motor issues were obvious while he was running track, most runners look nice and graceful, Ricky however looked to lumber as he ran. </div><div class="separator"><br /></div><div class="separator">After high school, Ricky attended Westfield State College in Massachusetts and got a major in both history & political science. While in college Ricky started to be more accepting of his NF and started doing public speaking raising awareness for the disorder. After college Ricky joined his mother as a member of the Boston Gala Committee eventually serving as a co-chair which then led to him joining the Volunteer Leadership Council of the Children’s Tumor Foundation. </div><div><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZKsetpmemteNsEusgqNnwNoPIUCkumPgmH-57niysbczH0Lh9t0Txj3Or8T2xhfeNrWDtMql3sDl7mlEGqLQsFcbgIjTVwBcx_wDCttLVVXXny9Hrpso8o0aIeW2POjz0Azjk1mM65xJE/s933/RickySwordSketch.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="933" data-original-width="743" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZKsetpmemteNsEusgqNnwNoPIUCkumPgmH-57niysbczH0Lh9t0Txj3Or8T2xhfeNrWDtMql3sDl7mlEGqLQsFcbgIjTVwBcx_wDCttLVVXXny9Hrpso8o0aIeW2POjz0Azjk1mM65xJE/w160-h200/RickySwordSketch.jpg" width="160" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Prep Sketch</td></tr></tbody></table><br /></div>Outside of NF activities Ricky is happily married and is a member of the Civil Air Patrol in Massachusetts Wing having served in many positions ranging from Squadron which is a local unit to Region which oversees multiple states. He’s earned his Master Rating in Aerospace Education and Safety. He is also a member of the Knights Columbus where he has been a Faithful Navigator, Grand Knight, and District Deputy. He has also served as Color Corps Commander overseeing important ceremonial activities in the Knights of Columbus.rmindruphttp://www.blogger.com/profile/07021250508807992265noreply@blogger.com0tag:blogger.com,1999:blog-5959946572199683786.post-81509005167722930312021-01-12T12:47:00.009-06:002021-02-05T19:09:49.974-06:00Case Study #94 - Jay Never Giving Up<div><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi201kS-zNyzZbs3ZTYya63ARqY8oWw0Avcave7eEzMmSG8QJ-L_3zH-uMZ3dx91YlkWTlW4d0fMOek-CG_HfsY4Rvw2HZnWRFHYAo6pWSeQ0jYsgxeb_23Rxi1LK-jndnuptSv-8hSnqrK/s1879/Mindrup_JayNeverGivingUp.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1879" data-original-width="1500" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi201kS-zNyzZbs3ZTYya63ARqY8oWw0Avcave7eEzMmSG8QJ-L_3zH-uMZ3dx91YlkWTlW4d0fMOek-CG_HfsY4Rvw2HZnWRFHYAo6pWSeQ0jYsgxeb_23Rxi1LK-jndnuptSv-8hSnqrK/w319-h400/Mindrup_JayNeverGivingUp.jpg" width="319" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">"Jay Never Giving Up" 30" x 24" Oil on Canvas.</td></tr></tbody></table><br />Jay was born in September 11, 1984 and diagnosed in March of 1986 by the craniofacial team of CHLA - Children's Hospital of Los Angeles with NF. His doctor was Dr. Larry Nichter who the family then followed to CHOC (Children's Hospital of Orange County). <div><br /></div><div>When Jay was in first grade he was featured in an article with his mother to help spread NF awareness. It was his second time spreading NF Awareness for the NF Inc. Phoenix chapter. In 1st grade he did a PSA with the then Phoenix Roadrunner Hockey team. Growing up, Jay would cry and beg his mother not to send him to school. This happened from his baby carrier days, to stroller/toddler days until the 6th grade. His mother gave him sage advice saying "When kids make fun of you and point out things just say 'What good eyes you have. You are going to be an excellent scientist or detective!'" This served Jay well and was a great way to diffuse situations. Middle school was heaven because he was no longer called freak or monster, as he used his humor as a way of dealing with NF. Although one particular incident really hurt his feelings. Many of the school girls kept asking if he was going to attend the Valentine's Day Dance. He and his mother went out and bought a suit. Jay was excited and proud to go only to find out that the same group of girls who were asking if he'd go suddenly did an about face and told him that they were joking and never really thought he would come. Jay was devastated. The school principal was alerted and the girls apologized. In high school, Jay enjoyed swimming and lettered with the Coronado Swim Team.<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjollUwYxhkoq43okIdXZHX3CXxMvDFjqLTf9tNjDRH1mFKYnGNaK72adbh08lUdfBCh1XaFyxFerXaSzOrI59VVFSlkobsIGyfdiecWsFWiqIKwedzKxeKvWPKpZb5xC5nh1sf4v9YEkT-/s1800/JayIdea.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1800" data-original-width="1440" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjollUwYxhkoq43okIdXZHX3CXxMvDFjqLTf9tNjDRH1mFKYnGNaK72adbh08lUdfBCh1XaFyxFerXaSzOrI59VVFSlkobsIGyfdiecWsFWiqIKwedzKxeKvWPKpZb5xC5nh1sf4v9YEkT-/w160-h200/JayIdea.jpg" width="160" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Prep Sketch</td></tr></tbody></table></div><div><br /></div><div>As an adult, Jay loved the Philadelphia Eagles football team and WWE Wrestling. At one point he even got received an encouraging video from the Bella Twins while he was undergoing treatments. Throughout his adult life, Jay had his tumors debulked several times. Jay's treatment was always done in Phoenix at St. Joseph's Barrow Neurological Institute. The cyber knife/radiation is run with the University of Arizona. Jay's brain tumor turned malignant and he passed away March 6, 2020. His mother donated his brain at his request to the Ivy Tumor Center so more NF research can be done to help other NF families. The rest of his body was used for surgical research in the orthopedic field.</div><p></p>
</div>rmindruphttp://www.blogger.com/profile/07021250508807992265noreply@blogger.com0tag:blogger.com,1999:blog-5959946572199683786.post-20615695817184876992020-12-05T13:13:00.002-06:002021-01-20T18:59:48.632-06:00Case Study #93 - Noah Taking Tickets<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhtc2_6Yiv_4rljxcVyDNaD4CCOFvHtUQK2TNIsR76SjmWRcks8WgXdmNIhe7jBxd6rEafteP8kyufvCflQraiKJje5H-7FR_RMrz0LCalCBFbY79VUkrBDSHFC4v1nQriBzour2rRSoB3S/s615/Mindrup_NoahTickets.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto; text-align: center;"><img border="0" data-original-height="615" data-original-width="500" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhtc2_6Yiv_4rljxcVyDNaD4CCOFvHtUQK2TNIsR76SjmWRcks8WgXdmNIhe7jBxd6rEafteP8kyufvCflQraiKJje5H-7FR_RMrz0LCalCBFbY79VUkrBDSHFC4v1nQriBzour2rRSoB3S/w325-h400/Mindrup_NoahTickets.jpg" width="325" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">"Noah Taking Tickets" 30" x 24" Oil on Canvas.</td></tr></tbody></table><p></p>Twenty-seven- year- old Noah Hester was diagnosed with NF when he was five months old. He also lives with Moyamoya Syndrome, a rare disorder that effects the vessels in the brain. Since his diagnosis he has had three strokes, many surgeries and suffers learning differences plus physical deficits. Through it all, he has been a constant inspiration to everyone he meets. His attitude - always positive. His mood – always happy. His smile never fades.<p></p><p>When Noah was diagnosed, it was at a routine doctor visit – he noted just a few café au lait spots and that was the first the family had heard the word: Neurofibromatosis. Three months later everything changed. One morning Noah’s arm started to twitch and his right side seemed weak. A call to the nurse assured the family that it was nothing. However, the next morning his entire right side became involved. By the end of the following week, he had been to see a neurologist, had an MRI, an EEG and a cause. Ten percent of his brain was "calcified" due to a stroke in - utero. What did that mean?</p><p>At the family's request, the pediatrician tracked down and arranged for a visit with NF expert, Mary Zupanc at the Mayo Clinic (in 1993 the internet was not available as a tool). Dr. Zupanc ordered an angiogram and it suggested Moyamoya Syndrome. The family watched and waited. Years went by with no real health concerns although Noah struggled with gross and fine motor skills as well as learning and speech difficulties. He did not walk until 30 months.</p><p>After two cerebral events: one in 2005 and one in 2014, Noah underwent cerebral vascular surgery, giving the family hope that the strokes were behind him. Today, his shiny, fun personality thrives and remains remarkable to everyone he gets to know. His love of movies, sports and video games keep him entertained and very busy.<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgM4-zOBXrcqSuxSwINcIq7pyNcaQ9rx9gIAp6XB4tKFdagVxO9QFyFKi4yhSt8YiACmpmel81HrNZd9hqwIxc7O0CeLJzFFLncmKFvxM1E6f4B_mP4YR5t9OxyF06CzZv3h0RFVG-ObpJw/s564/NoahIdea.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="564" data-original-width="466" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgM4-zOBXrcqSuxSwINcIq7pyNcaQ9rx9gIAp6XB4tKFdagVxO9QFyFKi4yhSt8YiACmpmel81HrNZd9hqwIxc7O0CeLJzFFLncmKFvxM1E6f4B_mP4YR5t9OxyF06CzZv3h0RFVG-ObpJw/w165-h200/NoahIdea.jpg" width="165" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Prep Sketch</td></tr></tbody></table></p><p>He has worked at Regal Cinemas since 2017 and looks forward to every minute. He is even on a first name basis with several celebrities who frequent his theatre! What makes this young guy especially remarkable is that through test after test, poke after poke, symptom after symptom: he never complains. His smile doesn’t fade, his outlook stays positive.</p><p>Nashville has come a long way since Noah's diagnosis in 1993. The Monroe Carell, Jr. Children's Hospital was built, bringing doctors with the very training we sought at the Mayo Clinic right to middle Tennessee. And in 2010 Vanderbilt opened its very on NF Clinic. Noah and his family owe so much to NF Tennessee and hope to continue to support their effort and do everything they can to ensure their success.</p><div class="separator" style="clear: both; text-align: center;"><br /></div><br />rmindruphttp://www.blogger.com/profile/07021250508807992265noreply@blogger.com0