Case Study #121 - Susan Running a Marathon

 

Susan Running a Marathon Prep Sketch

Susan Craig was diagnosed with Neurofibromatosis Type 1 at the age of two. Her mother as well as her sister, who was nine years older also had/has the condition. Susan had some learning disabilities as a child, especially in math, fine and gross motor skills and visual perception difficulties. She also suffered from depression due to difficulties with socialization. By the time she was in ninth grade, her parents were told she needed to find something to live for, or they would lose her. She always wanted to take martial arts, so that’s what she began to do, and she remains active in Tae Kwon Do to this day and is a 3rd Dan black belt. As part of her martial arts training, her instructor encouraged her to run, and she soon discovered she had a talent for that also, including running cross country and track in college. 

After college, Susan ran a couple of marathons. At the age of twenty three, she gave birth to a son named Matthew who also had NF1. At the age of four, Matthew would pass away from Juvenile Myelomonocytic Leukemia and T-cell Lymphoma, both linked to NF1. After his passing, she felt a great need to do something to make a difference. She ran the Honolulu Marathon for Leukemia and Lymphoma Society and was able to raise $5000. She has run well over 50 marathons since then, including the St. Jude Marathon and Boston Marathon multiple times, as well as the New York City Marathon. She has also competed in mountain races in the past, but increasing difficulties with balance has necessitated discontinuing competition in mountain or trail events. Susan is still a bit shy until she gets to know you. She also has difficulty with navigating in unfamiliar places. She has some muscle weakness, scoliosis, and ataxia, but none of that stops her from leading a very happy and active life. To her, the greatest satisfaction in life comes from helping/encouraging others.

Case Study #120 - Oliver Advocating for the NF Community

Oliver Advocating for the NF Community sketch

Oliver was born in Cape Town, in South Africa in 1982, and is the oldest of two children. Oliver and his brother were both diagnosed with Neurofibromatosis (NF) at birth and inherited it from their father. NF, particularly type 1, which is the type that they have, is a rare condition characterised by the presentation of tumours which occur at the nerve endings. These appear as little bumps and lumps under the skin. The smaller tumours are called neurofibromas and the larger tumours which cause craniofacial differences are called Plexiform fibromas. Oliver has had both types of tumours. Oliver was born with a plexiform fibroma over his right eye, which grew over time through childhood and into adolescence and yound adulthood. This resulted in a droopy eye. Successive rounds of neuropsurgery were performed on Oliver to debulk the tumour, but because they were trying to preserve the right eye, the tumour kept growing back. In 2022, Oliver had craniotomy surgery called to remove the right eye and finally the tumour totally. Because of all the damage the tumour caused, he had a PEAK or plastic skull inserted to help with symmetry or cosmesis. Apart from all the brain surgery, Oliver has had multiple surgeries to remove the neurofibromas when they have become too big. Surgery is a way of life for people with NF. Oliver has faced a lot of discrimination because he looks different. He now campaigns on social media to raise awareness for the joint communities of people living with NF and Visible Differences. He is a motivator, speaker, writer and content creator. His full time day job is as a Mental Health Crisis Worker for the National Health Service in the United Kingdom.

Case Study #119 - Brandon Sketching on the Porch

"Brandon Sketching on the Porch" 30" x 24" Oil on Canvas.

Brandon Layne was first diagnosed with NF1 at the age of 10 in 1991 at Vanderbilt University Medical Center in Nashville Tennessee. His parents had never heard of this before but had often about the odd birthmarks but didn't think much of it until his left cheek began to swell and he would have headaches. When he was finally properly diagnosed he was referred to surgeon Dr. Kevin Kelly who ordered an MRI and discovered the growth of a tumor that was 99 percent removed. Over the next 25 years tumors would return and have to be removed one on particuluar causing damage severe enough that bone had to be grafted from other places to repair his cheekbones. They have also been removed from his his left hand and calf and they continue emerge and are being closely monitored. He says the worst thing about NF growing up was the lack of friends which really hurt but he found other ways to occupy his time. Drawing and making up his own stories became a passion that he still greatly enjoys today.

Brandon Sketching on the Porch - prep sketch

Brandon enjoys talking with people about NF and trying to help them understand it. He is thankful everyday for loving family and his supportive wife Rebekah who is always there for him.

Case Study #118 - Rebecca Planting in her Garden

"Rebecca Planting in her Garden" 30" x 24" Oil on Canvas

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.

Rebecca prep sketch

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.

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.

Case Study #117 - Antwan Motivating Others

"Antwan Motivating Others" 30" x 24" Oil on Canvas

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.”

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.

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.

Prep Sketch

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.

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.

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.

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.

Case Study #116 - Frankie's New Wheels

"Frankie's New Wheels" Oil on Canvas. 2023. 40" x 30"

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. 

Prep Sketch

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.

Case Study #114 and #115 - Thad's Eye Surgery

The Journey Starts Today (Before and After)
2022
Oil on Canvas
Diptych, Each 36" x 36"

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.

This painting shows Thad's Enucleation procedure which is performed as a last resort, most often due to ocular tumors. 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.