Case Study #93 - Noah Taking Tickets

"Noah Taking Tickets" 30" x 24" Oil on Canvas.

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.

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?

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.

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.

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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.

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.

Case Study #92 - Ted Practicing Law

"Ted Practicing Law" Oil on Canvas. 2021

Theodore W. (Ted) Goodman, lives in Murfreesboro, Tennessee, with his wife, Kelly, and son Will. Ted has Neurofibromatosis (Type I) and scoliosis (curvature of the spine) that is often associated with NF. Ted wore a back brace from the age of 14 until he was 20. Though Ted had several Neurofibroma tumors removed as a child, he was not formally diagnosed with Neurofibromatosis until he was 25 years old when it was discovered in the course a military physical. 

As a law-student at the University of Tennessee, Ted received offers of commission as a Judge Advocate General (JAG) Officer from the Army and the Airforce. However, those offers were contingent upon receiving a satisfactory medical examination. During a follow up military physical in April, the doctor detected symptoms of spinal cord compression and ordered an MRI. The MRI revealed two Neurofibroma tumors located at C1 and C2 (the top of the spinal cord, near the base of the brain). Later that week, with just two weeks remaining before law school graduation, and only 12 weeks before the bar exam, Ted consulted with a neurosurgeon who informed Ted that he would have to cancel his plans to take the bar exam because he would be recuperating from a major neurosurgery to remove the tumors. The doctors informed Ted that he would never be able to serve in the military. In the matter of just a few days, Ted’s military career evaporated and he learned he would be undergoing major surgery. However, Ted was very fortunate because his spinal cord compression was discovered mere weeks before doctors believed he would have likely experienced permanent partial or total paralysis. Without the military commission and subsequent medical exams, Ted’s condition would not have been discovered in time.

While recovering from his surgery, Ted studied for the bar exam. Ted returned to his native Murfreesboro, married Kelly (who stuck by his side through the entire ordeal), opened his law practice, and eventually became a partner at Murfree & Goodman, PLLC, focusing his practice in estate planning, probate, business, and real estate law.

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Ted’s neurologist, Dr. Paul Moots, envisioned founding a non-profit corporation to provide support for NF patients, their families, and public awareness initiatives. Dr. Moots’ vision came to life with the creation of NF Tennessee, Inc. Ted volunteered his time to perform the legal work necessary to establish the organization, and has served on its board since its inception. NF Tennessee has provided support (including laptop computers) directly to NF patients, has sent children with NF to summer camps for NF children, and has advocated for the interests of NF patients at the local, state, and federal government levels.

Ted also serves on Board of Directors of the Lascassas Volunteer Fire Department, the Tennessee Bar Association House of Delegates, The Webb School Alumni Board, the Board of Directors of Oaklands Mansion Historic House Museum, and has served in many other organizations. Ted enjoys spending time on his family’s farm with his wife and son.

Case Study #91 - Jason Stripping Copper Wire

"Jason Stripping Copper Wire" Oil on Canvas. 30" x 24"

Jason Britt Thompson was born with NF. He currently lives in Jackson, Tennessee. His doctors said he would not live to see 14 years, but he proved them wrong. Jason is the only one in his family to have NF. Jason has two older brothers who do not have NF. He traced his ancestry back to 3 sets of great grand parents on both sides, but found no trace of it which led him to believe that his is due to a spontaneous gene mutation. 

Jason's NF has been hard for him as his left eye has no socket and it pulses with his brain. Jason's right eye has a skin fold that he was born with encompassing a large NF tumor. The doctors put in balloons under the skin to stretch it out so the skin on his right sight side.

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Jason was put in a body cast at 6 years old for a leg tumor. A few years later when he was 9 years old he had metal rods put in his spine. As an adult in 2010, Jason went to see if sinus surgery would help as he was having problems with his eye tumors. The optic glioma (eye tumor) is causing him to start to lose his vision.

After high school, Jason worked at McDonald's and eventually became a manager. It took awhile for his disability to get approved, but after 6 years and several courts, it finally happened. Jason finds dating to be difficult and he certainly does not want to have his own children believing that passing NF onto children would make their lives very problematic. He is very open to dating someone who already has kids or even adopting together if that special woman ever wanted to do that. Currently, Jason strips wire for copper or takes apart ac units for copper coils and sell them for extra money. Jason also loves to fish and garden.

Case Study #90 - Aaron Visiting Tibet

"Aaron Visiting Tibet" Oil on Canvas. 30" x 24"

Aaron Anderson was born in Michigan in 1981. He was a chubby little blonde who never met a ball he didn’t want. He excelled in gross motor skills and language development. The diagnosis of NF1 at age three was a shock. If a friend hadn’t shown his mother her own daughter’s cafe-au-lait spots, the family would never have guessed that anything was amiss. 

Apart from some fine motor delays and a moderate degree of ADD, Aaron’s NF had only minor impact on his early school years. His thoughts would get ahead of his slow handwriting, which made for messy assignments. Although he learned easily, his notebooks were a chaotic mess. He left a trail of possessions wherever he went. He studied in 20-minute bursts and always with TV or music (hiphop) going. At night the hum of a fan helped him sleep. On the plus side, his quick wit, diplomacy and generous nature made him everyone’s friend.  Besides his love for balls, ball sports and music, he continued to add new interests.

After junior year he entered a two-year international baccalaureate program in New Mexico. The program, designed to promote world peace, had only 200 students - 50 Americans and 150 from dozens of other countries. There he developed an interest in Tibetan Buddhism and added friends from around the world. Next was the University of Michigan, where his ADD caught up with him. Having chosen grades over sleep, he was heading toward a crash.  Enter Concerta, the salvation of his college career.  By cosmic good fortune Michigan regularly hosted a summer Tibet program.  This painting is from a photo taken on the first of three Tibet trips. In those same years his music passion shifted to a genre known as Northern Soul produced in nearby Detroit. He would scour Detroit junk shops, “digging” for obscure 45s from the 60s and 70s. 

In 2006 Aaron was accepted into a PhD program in California to study child development. It only took a year to realize he wasn’t enjoying life as he had in Ann Arbor. Grad school didn’t have room for his wide-ranging interests. He planned to finish the two-year Master’s degree and recalculate his future.  Everything changed in March 2008; he stopped going to class, answering emails, texts, phone calls or knocks on his door. It took three months of this reclusive behavior to get him admitted to the psych ward of the university’s hospital. Within two days came the answer - a tumor deep in his brain, malignant and inoperable. Six months of treatment brought him back to his fun-loving self.  At  nearly 28 years old, he moved home to Michigan to live his best life, not as an academic, but as a DJ and record dealer. He died in Buddhist peace at age 30, leaving a trail of friends around the world.

The story continues past Aaron’s death in Sept. 2011. With the help of his neuro-oncologist at Michigan and NF researcher, David Gutmann in St. Louis, Aaron was able to donate his body to the Univ. of Michigan and his brain to Dr. Gutmann’s Washington University lab. Within seven years the speed and accuracy of genome analysis increased so significantly that the progression of the brain tumor, a glioblastoma, could be tracked through its many genetic changes.  A brief paper about the tumor appeared in the journal Neurology in late 2019. The family cheered. Take a bow, Aaron!

Case Study #89 - Patricia Relaying for Life

"Patricia Relaying for Life"
Oil on Canvas. 30" x 24". 2020.

While growing up in Jackson, TN, Patricia and her family had never heard of NF. Their doctor told the family it was just fatty tumors. When Patricia's brother was a teen, she was in her early 20s. He started having some serious issues and was sent to a neurologist and that was when the family learned exactly what they had. Patricia had a fairly normal childhood. Looking back now she can see some issues that were probably because of the NF. She and her siblings inherited NF from her mother. Patricia's sister and two brothers also had NF. Her mother as well as her sister and one of her brothers died from NF related cancer. 

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Patricia had breast cancer and had a mastectomy 6 weeks before her daughter, Amber died from her NF related brain cancer. Amber was only 24 when she passed away. Her son Justin has NF too. Her son's case is relatively mild. When Amber was little, Patricia and her husband were not planning on having anymore children because Amber's NF was severe. Amber was born with a brain tumor, optic glioma, and a mass in her neck. Amber had the brain tumor removed at 1 year. The Lord surprised and blessed them with Justin. Patricia is so thankful for both of her children.

Patricia attended Tennessee Vocational Technical earning her LPN in 1974. She retired from nursing in 2015 the same year she celebrated 10 years as a cancer survivor by participating in the Relay for Life walk.

Case Study #88 - Kathy Climbing to the Base Camp of Mt. Everest

"Kathy Climbing to Mt. Everest's Base Camp" Oil on Canvas. 30" x 24" 2020.

Kathy Diane Wennihan was was born in 1960 in Fairfax, MO. After receiving her high school diploma from Oak Park Academy in Nevada, IA in 1978, Kathy attended Union College in Lincoln, NE. Kathy resided in Des Moines with her two most recent rescue cats, Eli and Delilah. Kathy enjoyed a long career as a Patient Care Technician with Mercy Hospitals in Des Moines where she was fortunate to have met and bonded with many kind and supportive friends.

Kathy had NF1 which manifested itself in many different ways throughout her life

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. Kathy was active with the Children's Tumor Foundation and attended the CTF NF patient forum in Austin, TX in 2016 to learn more about how to get relief from the nerve pain through clinical trials although there was not one that she qualified for at the time. Kathy also took great pride in her association with Above + Beyond Cancer, a charitable organization with the mission to elevate the lives of those touched by cancer, to create a healthier world, and through that association she transformed from relatively inactive into an accomplished athletic adventurer.

Never a runner, Kathy completed a marathon while suffering through cancer treatments. She ventured with Above + Beyond to Everest Base Camp and was part of the Above + Beyond Cancer Team for Dam to Dam and the Des Moines marathon. She also participated in many indoor cycling classes.

Kathy was a tireless volunteer and was chosen for the Above + Beyond Cancer Award in 2018. Kathy has become a pillar of the amazing impact Above + Beyond Cancer can have on cancer survivors. Kathy passed away in 2019 following a lengthy battle with cancer.

Case Study #87 - Lars Responding to Messages

"Lars Responding to Messages" 30" x 24" Oil on Canvas.

Lars Roeyen (1997-2014) 

Lars lived in the city of Genk within the region of Limburg, Belgium. He was born with a predisposition disorder. When he was 2 years old we noticed that his fine motor skills showed some defects. An MRI showed something but it was not clear and was not looked into further by the attending pediatrician. Kinetic therapy was recommended. Then suddenly at the age of 16 he got a bump on his head that the doctor thought was a fat bump. Lars was disturbed by this bump and he was bullied with it at school. A cardiovascular surgeon removed his bump under local anesthesia and saw that it was attached to the nerves. She immediately made the link at NF and a new MRI showed that he had one tumor in the brain stem, one on and a larger older one outside. In total he had 19 tumors spread on the spiral cord and face. He walked into hospital for an urgent brain operation and came out with paralyzed hands and legs.TV and Facebook were his only outlet and even with this he needed help. Despite all this he remained optimistic with an indescribable humor. On  November 1, 2014 he said goodbye to us with a very scared heart about what was to come. 

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NF changed the lives of his family forever. He wanted to be famous for 1 day and he succeeded. He was invited on Q-Music which is a famous Belgian radio station. While the family was there the big boss saw him and asked to follow Lars for the rest of the day to make a newsflash. The man onthe radio station broadcasted to the people listening to write Lars cards while he was in the hospital. He got about 4,000 cards in the rehabilitation clinic and also at home. There were even people who sent the family some money for a drive with the special cab. (This was very expensive! Lars never left home for the rest of his days after it.) Lars got letters from all over the world including the queen and king of Belgium as well as their army. His sister, who is three years older, was his mainstay, nurse and best friend as well as his dog Pepa who rode everywhere on the rock chair. Lars was a NF2 warrior.

Case Study #86 - Tommy Showing the Way

"Tommy Showing the Way" Oil on Canvas. 30" x 24"

Thomas A. Dobbin aka the Mandalorian (1980 - 2012)

Tommy was diagnosed with Neurofibromatosis (NF) when he was just six months old. The telltale sign that led to this discovery was a café au lait spot on Tommy's young body. Even at a young age, and with very little knowledge of NF, Tommy accepted the challenge that his life offered. Tommy’s NF slowed his progress down, but never stopped him, because “that was the way” (The Mandalorian). Tommy's head was slightly larger than most due to a dormant tumor in his head. When Tommy hit puberty, his NF kicked into high gear with visual lumps on some spots of his skin, as well as inside his chest cavity. As Tommy struggled with growth from boy to man, he also battled with his peers noticing 

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that he was different in speed, education, and motor function skills but smiled it off, because “that was the way.” It was this same smile that won the hearts of so many that encountered Tommy and is the same reason why he had the backing of his High School Basketball team to make a basket but was unable to. During his senior year he found out that some of the tumors inside his chest were on his lungs, but that same year he made a basket during a game and had the whole crowed cheering and standing.

After high school, Tommy struggled with learning how to drive so he walked everywhere. This is right about the same time when his NF stared to provide Tommy with additional problems. Tommy had one of the tumors on his lung cause a bleed that resulted in the removal of part of his lung. In Tommy's prime he suffered the same bleed on the opposite side, but this time the result was it stopped without having to remove part of that lung. Despite his medical struggles, Tommy met the love of his life, Tiffany, and they were married. They were blessed with two children, a boy and a girl, who were fortunately not born with the same genetic disorder. Tommy knew he could collect money from the state for his medical issues but chose to work and provide for his family as a cart pusher all while walking to work each day, because “this was the way.”

In his 30’s Tommy NF progressed to a point where the tumors wrapped around the organ that so many loved, his heart. Tommy started to struggle more with work and daily tasks. In an effort to slow the growth of the tumor wrapping around his aorta, Tommy went to a Manhattan hospital to receive a drug to slow the growth. Unfortunately, the treatment was cut short as he lost his battle to NF two months later at the age of 32. Until the end, Tommy continued to work, be a great father to his kids, a doting husband, and a shining beacon to all that witnessed his drive and smile, because “this was the way.” Tommy loved to cook, the outdoors, his family, all walks of life and just that, LIFE. Tommy’s motivation to live life to the fullest is a reminder to all that met him, because “that is the way.”

Case Study #85 - Laurie Sewing a Baby Bib

"Laurie Sewing a Baby Bib" 30" x 24" Oil on Canvas. 2020.

When Laurie was born in 1973, the doctors noticed cafe au lait spots, one of which was wrapped around her torso. They also noticed small tumors on her left buttock, and one on her right leg. After a few months the doctors told her parents the news. Laurie had Neurofibromatosis type 1. The doctors knew very little and assumed her life was going to be short and painful. As she grew the signs of NF1 became more apparent, Laurie spent many nights sleeping with her parents begging for them to stop the pain. They wanted to but they couldn’t and the doctors didn’t know how. As Laurie grew her parents noticed that her legs were different lengths and she had developed a major limp. Once the doctors knew the difference in the length, Laurie had to have a lift built on the bottom of her right sho

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When Laurie was eight she went to John Hopkins Hospital in Baltimore, MD where she had the first of many surgeries including the debulking of a plexiform tumor in 1981. Laurie would continue to have many surgeries to debulk and remove tumors. Those tumors are and have returned, getting them out completely is never going to happen. As a school girl, learning was a challenge. Laurie struggled to make friends and would be bullied daily from classmates. She was constantly reminded of how stupid she was and when Laurie couldn’t pass a test it was a reminder. In physical education classmates would never want her on their team. During PE class the other classmates would end up throwing/kicking balls that would purposely hit her where the plexiform tumors were. Teachers never really seemed to care. 

Laurie hated school. She wanted out so badly. Laurie graduated high school and went on to earn two associate degrees, through a local community college. As an adult Laurie has had to continue to have surgeries, some of been pretty challenging to recover from, but she has learned to manage. Because the risk that the plexiform tumors may become cancerous, routine MRIs are normal, but now she is used to having them that she can easily sleep through them. Daily life is filled with chronic pain, some days it’s rough but getting up and facing the day is important. 

Laurie has spent 28 years in the classroom, the first five years she worked in a child care center as an aide for infants through 2 year olds. The second five years she was in charge of fifteen two year olds and 2 assistants. She loved those little children and found that age to be entertaining and challenging. The last eighteen years she has been an instructional kindergarten assistant which was her calling. These past eighteen years have been wonderful for her, despite being in severe pain all the time. Her job has been her happy place. Those kids have given her a purpose, a reason to actually want to get out of bed, and a reason and a purpose to keep up the fight.

Case Study #84 - Michaela Ringing the Bell

"Michaela Ringing the Bell" Oil on Canvas. 30" x 24" 2020.

Michaela was born in Rome, New York. No one in her family had NF and it was only discovered during a routine wellness exam at the airforce base that her dad was stationed at in Texas. The doctor looked at her skin and asked her if she knew she had it. She did not.

Growing up, Michaela enjoyed learning German and enjoying those traditions as her father met her mother when he was stationed in Germany. She has two younger brothers. One is now a dentist and the other a real estate broker. She has lived in Albuquerque, New Mexico and has lived in South Carolina since 1995. She has one son who is does not have NF and will be graduating soon from Winthrop University.

Michaela has had to have some of her NF tumors removed and more recently has battled both sta

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ge 4 breast cancer and brain cancer during her adult life all within the span of less than two years. While NF doesn't necessarily cause breast cancer, those with NF have a five times greater chance of hav

ing it compared to the unaffected population (per information from the National Institute of Health). Michaela just recently finished her last round of radiation for breast cancer which was #53. Earlier in the year she had to have gamma knife surgery for her brain cancer. She receives her care at the Medical University of South Carolina. Prior to battling cancer, Michaela worked as an elderly caretaker and loved it. The constant toll of being on chemo and radiation leaves her feeling fatigued quite often. Michaela loves kayaking, yoga, movies, music, travel including cruises, swimming, drawing, reading and going to the beach along with tai chi gi gong meditation.

Case Study #83 - Dorothy Enjoying Reggie's Sweet Potato Pie

"Dorothy Enjoying Reggie's Sweet Potato Pie" Oil on Canvas. 30" x 24" 2020.

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Dorothy Bibbs is Reggie Bibbs's mother. (Reggie was the first oil painting I did in 2012.) Dorothy is the youngest in her family and did not know she had NF until her youngest son Reggie was diagnosed. Her NF was caused by a spontaneous gene mutation as no one else in her family has it. She did not even realize she had NF until Reggie was born as she had no real signs or symptoms growing up.

Dorothy has two daughters and four sons, two of the sons have sadly already passed away. Along with everyone else, Dorothy enjoys her son's baking prowess and Reggie enjoys baking her favorite deserts which include both carrot cake and sweet potato pie to name a few.

Currently she and Reggie live together in Houston, Texas and enjoy having the family all come over and visit.

Case Study #82 - Donna Capturing the Scene

"Donna Capturing the Scene" Oil on Canvas. 30" x 24"

Donna was born in 1960 and grew up in South Dakota. Donna has had problems with coordination her whole life but, she was not diagnosed with NF until adulthood. Her mother, Patricia, had been diagnosed with what was then called Von Recklinhausen’s Disease as an adult as well, after she had a large tumor removed from her arm and the pathology report came back. The rural doctor did not know much about it, He also said any of her children who had light tan birthmarks “might get a lump or two some day,” but that is was only a cosmetic concern and nothing to worry about. Her mother, Patricia died of kidney cancer at age 49, in 1985, but doctors at that time did not seem to think it had anything to do with her earlier diagnoses. (Later it was determined that it probably did.)

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Donna had the CALS since early childhood and started getting a few lumps as a teenager. but she still could not get a proper diagnosis until she was 41 when a doctor sent her to Mayo Clinic in Rochester, Minn. During that visit, doctors discovered bilateral pheochromocytomas (tumors on both adrenal glands) Pheos are uncommon, but more common in people with NF. They can cause a lot of serious health issues if not found. She had successful surgery for the adrenal tumors 19 years ago. She will be 60 this year, and has had a steady increase in tumors over the years, but still has a fairly mild case, She has two grown children who did not inherit NF. Although she did not attend college, she has had a long-time photography hobby, and enjoyed writing. She started working as a reporter-photographer at her small town newspaper at age 50 and eventually became editor. In her spare time, Donna likes photographing the wildlife in her area.

Case Study #81 - Courtney Preparing the Panda Warmer

"Courtney Preparing the Panda Warmer" 30" x 24" Oil on Canvas.

Courtney Willoughby is a Registered Nurse living with Neurofibromatosis Type-1 (NF1). She was diagnosed after developing shingles at the age of 3. She is the first in her family to live with this condition.

At the age of 13, Courtney was diagnosed with a hypothalamic-pituitary brain tumor. She was also diagnosed with scoliosis, hypopituitarism, growth hormone deficiency, a skeletal rib deformity, chronic headaches and tumors were found in her abdomen, pelvis, arms, legs and ear. Courtney found all of these diagnoses incredibly overwhelming, and feared judgment and ostracization from her peers at school. This caused her to keep her condition a secret, as she feared her peers would reject her once they found out she was “different”. This fear caused Courtney to develop anxiety and depression, which ultimately led her to develop a severe eating disorder. Her mental health spiraled out of control, as she continued to hide her struggles from her peers.

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Courtney did not reach out for help until her last year of high school, when she had the opportunity to meet Reggie Bibbs at an NF conference in Calgary, Alberta. This was a life changing experience, as she saw that it was possible to thrive with NF, and that there was an incredible community of people there to support her. After she told her friends and peers about her struggles, she was able to raise close to $15,000 for NF research and dedicated her funds to the Friedman Research Lab in British Columbia. She also helped develop a not for profit organization called The Alberta Tumour Foundation.

In 2016, Courtney graduated with her Bachelor of Science in Nursing degree (BScN), and currently works in labor and delivery helping bring new life into this world. Courtney was inspired to become a nurse after one of the nurses she worked closely with in her neurosurgery clinic recognized that she was struggling with an eating disorder and urged her to get the help she needed. Up until that time, Courtney’s eating disorder had not been addressed by medical professionals, and having this nurse recognize her struggles was like lifting an enormous weight off her shoulders. Courtney was determined to become a nurse after this experience so she could make an impact on patients like this nurse had made on her.

Today Courtney is relatively healthy. She is “weight restored” from her eating disorder. She has had 3 different surgeries to remove tumors, and is on several medications to control her hormone imbalances. The biggest issue she faces is controlling the pain resulting from her chronic headaches. She is getting married in September 2020, and is living life to the fullest. Her current hobbies include hiking, kayaking and anything that gets her outside in the mountains. She urges anyone living with NF to reach out to the wonderfully supportive NF community! It truly saved her life.

Case Study #80 - Cher Packing Lunches

"Cher Packing Lunches" Oil on Canvas. 30" x 24" 2020.

Cher Miles who is originally from Salisbury, Maryland found out she had NF when she was 11 years old. She is the youngest with two older sisters and brothers. Her sister took her to the doctor as her parents had passed away. She is the only one of her siblings to have NF. She isn't sure if it was passed down or if it is a spontaneous gene mutation. Her sister took her to the doctor because of the growing tumors on her arm.

There were two tumors in particular on her arm that were giving her problems. Eventually, Cher had to have her first surgery to take care of them. She was in middle school when it happened and the kids teased her about the tumors. Many of the kids would ask what happened to her not realizing it was a genetic disorder. Some people still ask her that question as an adult. These questions along with the teasing from her childhood left her with low self esteem. 

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In 1996 she got married and in 2000 moved to Port Wentworth, Georgia. She has three daughters and all three also have NF but with different symptoms. Her daughters seem to take it in stride and don't really complain and do not let it affect their outlooks.

For a long time, Cher worked in the food industry in a nursing home facility but recently switched to working in the food industry at a K-8 school. She did this to be on the same schedule as her niece whom she is helping to raise. Cher's low self esteem faded as an adult and she came to realize that others had NF much worse than her. She learned to be grateful that her NF was not nearly as bad as it could be. She still admits that she doesn't like the tumors and doesn't like to wear shorts and is self conscious of the tumors on her arm, but doesn't feel that it is too bad. She spends her time learning new recipes and keeping up to pace with preparing meals for those kids who still need their lunches even during this time of online learning due to the pandemic.

Case Study #79 - Cindy Making Homemade Runzas

"Cindy Making Homemade Runzas" Oil on Canvas. 30" x 24" 2020.

Cindy Lindsey was born Feb.18,1967 in Sidney NE. School and home life were a constant struggle due to the fact that she was suffering from unknown petit mal seizures. Thanks to a few caring elementary school teachers spending many days after school with her she maintained average grades. Junior high and high school were difficult with a lot of struggles. During this time her parents took her to several specialists each time being told several different things ranging from that there was absolutely nothing wrong except that she was a little slow and a daydreamer who would eventually catch up to that since she did not crawl as a baby this would always hold her back. Never once did the specialists do anything beyond giving a complete physical and running motor skills tests.

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Being told she was nothing more than a daydreamer really discouraged her and ignored the fact that she had petit mal seizures. Cindy was often teased because of the many birthmarks she had on her skin, and how she liked to daydream but she learned to ignore it and just do her best.

As a teen Cindy taught kids beginning swim lessons including how to float. This was one of her favorite activities in addition to riding her bicycle. She could do either for hours just by herself. She graduated high school and worked as a dishwasher in a small local café where she fell for her first husband and gave birth to her first child, still not knowing that she had NF. Being from two completely different worlds the she and her husband divorced after eighteen months.

Cindy went on to college to make a better world for her and her daughter. During this time she met the love of her life, Gus McGee, and married. This union brought to them the birth of their son. After graduating college with honors which was a pleasant surprise she took a year to be home and to take care of their son. Later she went to work at Cabela's and stayed working there for 27 years.

While at her husband's doctor appointment the doctor looked at the tumors in her hand and took her case history including the freckling and café a luit spots. This led to a lot of testing and her first surgery for NF. It finally answered a lot of questions as to why she had all these birth marks and deep tissue tumors that she had been told throughout her life "were nothing to worry about". At this time she was 30 years old. After the shock wore off she had her children tested: her daughter was positive for NF and her son was not.

One thing that really disappointed Cindy was the fact that after several years of running her from one doctor to another is the fact that her mother did not live long enough to find out that there was a reason her daughter had struggled so hard and that there was a clinical diagnosis. Cindy lost her mother at age 24. Several years later her grandson was born with many outward NF signs and she fought for his testing. While it took arguing with the pediatrician, they were finally sent for genetic testing and he was diagnosed with NF at 2 years of age.

Cindy went on believing that she was a genetic mutation and the first in her family to have NF until her maternal grandmothers death in 2017 where she met a third cousin who also had NF and that rocked their worlds: her grandmother and Cindy's grandmother were sisters so they both found out they were 4th generation because for both of them being the same age and their grandmothers being sisters for both of them to be genetic mutations the odds would be astronomical.

Cindy is never afraid to speak up about her disorder and will tell anyone who will listen about NF. She lives in a rural area but is very vocal and even on her bad days she keeps saying that she will not let this beat her, even to the point of refusing help when she really needs it. She is learning to accept help when needed but with lots of stubborn pride, that is when she needs to be reminded that this is an opportunity to teach someone about NF. She has never found a person who did not want to know more.

Case Study #78 - John Spinning Tunes

"John Spinning Tunes" 30" x 24" Oil on Canvas. Copyright 2020

John was born June 1997 in Lincoln, Nebraska and is the oldest of four. He was diagnosed with NF1 when he was 5 years old and is the first in his family to have neurofibromatosis. John lived a pretty “normal” childhood until the age of 8 when he experienced severe nerve pain on one side of his face. This led his doctors to discover a tumor on his brain stem. This was not a fast growing tumor, but it was a tumor in a very critical area. His life then changed to anything but “normal”.

John’s new reality was days spent at the hospital, at doctor offices, needle pokes, blood draws, MRI’s, and dealing with intense nerve pain. It then progressed to several brain surgeries, years of chemotherapy, more MRI’s, countless needle pokes, feeling sick and participating in research. He missed out on a lot, including school and school functions, birthday parties, and playing sports. He did not complain, and pushed through everything with a great attitude and perseverance. He was strong, brave and amazing. This tumor cannot be removed. It will always be there. If it remains stable, that is awesome. If it starts to grow he will need further treatment. John’s last surgery was when he was 15 and since then his tumor has been stable.

Prep Sketch

NF has taken a lot away from John, but it also provided some amazing experiences and connected him with lifelong friends. He has attended NF camp in Utah, and met other NF heroes from around the world. He has participated in fundraising and awareness events at the Daytona International Speedway and the Lincoln Marathon. He was chosen to go on a Circle of Friends trip to Wisconsin and Florida with several NFL players and other kids who were on chemotherapy. These trips were sponsored by former Husker Grant Wistrom, Jared Tomich and other NFL players. John went on a Make-a-Wish trip and chose to go to Legoland in California. He was active in Boy Scouts and earned the rank of Eagle Scout when he was 16. John is close to receiving a Bachelor’s Degree in Business Administration and works full time at Super Target. He loves listening to music, going to concerts, traveling, and spending time with his dogs and family.

Case Study #77 - Candice Preparing the EKG

"Candice Preparing the EKG" Oil on Canvas. 30" x 24"

Courageous and beautiful Candice is a lifelong survivor of NF. Born with a Neurofibroma facial tumor in 1969, she underwent over 30 surgeries to re-reconstruct her face. Recovering from those surgeries trapped under tight bandages were a hot muffled prison of pain. Healing meant embracing a face with new scars and stitches to manage a disease and move towards a symmetrical appearance. Loving herrself during such an extensive healing process was an effort of enormous physical and psychological endurance. It was during one of these times Candice began documenting her experiences and has been journaling about it for over 35 years. Instead of becoming bitter and angry at her circumstance it fueled an unstoppable passion for life and compassion for others. She has said many times that being born different is one of the truest tests in a human’s capability to love. The impact of Neurofibromatosis doesn’t define her but is a catalyst for her purpose driven life. Candice has used her life experiences as a patient to become a dedicated ER Nurse, inspirational speaker, triathlete and self proclaimed joyologist.

Prep Sketch for oil painting

Throughout her life she has dealt with ridicule from looking different and multiple challenges at times being temporarily blind and unable to speak. Despite what would be considered a life of painful suffering, Candice is one of the happiest humans on the planet. A devout Buddhist, Candice began meditating at age 14 to deal with pain caused by Neurofibromatosis. She often visualizes yoga asanas while in MRI machines where she’s had to lay for hours without moving. Her daily routine includes plant based nutrition, walking and yoga. She now shares her life experiences with adults speaking at schools and conferences bringing awareness for Neurofibromatosis and sharing healthy life strategies. 

Candice joined the efforts of the Children’s Tumor Foundation as a triathlete with the NF Endurance team and team captain for the Cupid Undie Run to continue efforts to support funding to cure. Her goal is simple, to leave behind a legacy of hope for children to not have to endure a life of surgery. That opportunity presented itself as Candice has also undergone diagnostic testing and donation of tumor tissue to progress towards a cure. She has spoken at many craniofacial conferences for All Children’s and Moffit Research Hospital in Florida. Candice’s energy and compassion continues to expand with her launch of the I am Beautiful, Some Assembly Required inspirational clothing line in 2019. “The message is that we are all under construction in some way physically or emotionally. Loving yourself through whatever process you are in is a key to self awareness and positive esteem.” Her goal and mission continues to help others accept themselves for who they are and propel research for a cure forward.

For more information please visit www.buttefflychallenge.com

Case Study #76 - Tina Lacing Up Her Cat Shoes

"Tina Lacing Up Her Cat Shoes" Oil on Canvas. 30" x 24"

Tina's NF was confirmed at age 13 when she had a fibroma removed and tested. Tina grew up with learning disabilities and speech issues. Now she is a wife and mental health therapist. She is a wife and mother of two young adult children one who also has NF1.

Tina experiences a pain that is best described as sending volts of electricity throughout her body. This chronic pain is a constant for her which means 24 hours a day x 7 days a week. It is the kind of pain that stops her from breathing, and causes migraines and severe upper back pain as well. The back pain is due to plexiform fibromas on her spine. Unfortunately, no physician will operate on those. Tina does not take narcotics, but has been begging her local university hospital to get the trial drug. Calling monthly, a year later, the drug trial became a reality. Tina just started taking the magic blue pills which is her last hope for pain relief. So far she has had good results.

Prep sketch for "Tina Lacing up her Cat Shoes"

Eight years ago Tina had an aneurysm and died momentarily. This was also caused due to her NF. Her near death experience forever changed her outlook. She is happy to be alive even living with all the side effects of NF1. During that experience, God let Tina see and feel what life would be like if she went to Heaven or stayed here on earth. Heaven was a euphoric feeling which she feels guiltily for leaving behind, because it felt so utterly unbelievable. Staying alive meant lightening volts of pain, deep breaths that hurt, anxiety and tears but all of that with her family. Family memories of watching her children grow into amazing adults her wonderful marriage made staying alive the right choice.

Case Study # 75 - April Embracing Star Trek

"April Embracing Star Trek"

April was born in Providence, Rhode Island. She was sick at birth which prompted doctors to label her a 'failure to thrive' and wanted to take her away from her family to be institutionalized. Her mother refused. While growing up April was surrounded by medical professionals who came into their home all the while assessing as to whether her mother could prove April was able to thrive and that she could take care of her.

Prep sketch--April enjoying her Star Trek book.

April had to prove she was, indeed, capable of thriving. At the age of two she was diagnosed with NF1. It was a spontaneous gene mutation and by age three, she was diagnosed with a  ganglioneuroblastoma. A genetic disorder and cancer diagnosis at the same time did prove difficult for her mother. Her mother fought for her, and April survived. April was a very quiet child who endured many surgeries. April's friends were imaginary and she would pull them out of the sky for comfort. Her school years also proved difficult as she was constantly made in fun of due to her appearance with NF and skin color. She did bond with a friend in school during that time and is still friends to this day. 

April had to prove herself in school as well. Administration assumed she needed special needs classes so she had to continually prove her intelligence. With the help of her mother by the end of high school she was in college prep level courses and went to a technical school afterwards. During her formative years, there were several surgeries to monitor the NF and countless doctor appointments to both monitor and to ensure cancer would not return. Growing up in the 80's and 90's a lot of the doctors were new to understanding NF. One doctor, unfortunately, actually called her his "guinea pig". 

Growing up she didn't like people as much as she did animals. She used to volunteer for animals in Woonsocket. Later she did manage to get jobs and keep them, As an adult she still battled with surgeries most notably the tumor on her face which cracked her hard palate. Upon checking the doctors found that the tumor has reached all the way into the brain. Surgery had to be done in which they replaced the palate with a plastic device. Afterwards, April had to learn to speak properly again while still going to work. However with all the maintenance of physical illnesses, mental illness was ignored and hardly mentioned due to her preference for silence. She was diagnosed as schizoaffective along with other mental and physical disorders and was placed on disability. 

In the 80's and 90's April embraced Star Trek which changed her world. Life went from seemingly grim, dark and hopeless to bright, hopeful and beautiful. And, most importantly, in Star Trek appearance meant nothing just the character's actions mattered. Currently, April spends her days giving to charities when she can, playing video games, starting trouble on facebook and of course enjoying Star Trek.

Case Study #74 - David Feeding the Fish

"David Feeding the Fish" 30" x 24" Oil on Canvas. 2020

David Ware was born in 1954 in Columbus Ohio and was born basically blind in his right eye and had numerous surgeries throughout the years to remove tumors that grew back. David is the only person in his family to have NF. His parents and two brothers were born in Texas which meant trips back every year to see his maternal grandmother. Every summer trip came with a surgery to work on his right eye. David says, "I would always be sitting in the eye doctors chair crying my eyes out because I felt I was ugly and unlovable and wanted him to give me an artificial eye but he never would because I had limited vision in the eye."

Prep Sketch for painting

David's dad was in the Air Force and the family was transferred several times. David remembers Topeka, Kansas where he attended kindergarten and Wichita, Kansas where he entered 1st grade. In 1963 the family moved to Lincoln, Nebraska where he started 3rd grade and graduated in 1973 from Lincoln Northeast High School. In 1974 David attended Oklahoma Baptist University until 1976 when he came back to Lincoln and received an associate degree in Business in 1978. In the 80's during an MRI the doctors found a tumor on his left thalamus but decided to just watch it as they did not know exactly what it was. Having problems with severe headaches, in 1998 David went to the Mayo Clinic for a biopsy and learned it was a low grade pilocitic astrocytoma and again the team just wanted to do yearly MRIs because to attempt to remove it might be fatal or leave him severely disabled. At that time, they guessed he would have about ten more years. Evidently, David fooled them as he is still kicking. He now suffers from chronic dizziness headaches.

David sold his house and quit his job of 14 years and moved to Idaho and got married in 2004. He went on social security disability in 2004 as well because of NF. The marriage did not last and in 2010 David got divorced and moved back to Lincoln to be with family and friends. In 2018 he found a neuro-ophthalmologist who was willing to remove his right eye and prepared him for a prosthetic eye. He finally had his prosthetic eye, something he had been asking for since he was a child.

NF: Nebraska - Portraits from Life

Tina Gunn - February 21, 2020 (Gretna, Nebraska)

Drawn from life by Tina's kitchen table

 I've known Tina for several years now. She was one of the first people in Nebraska that I met who was living with NF. Both she and her son, John have it. Her son is about four years older than mine and I remember how comforting it was when she would explain some of the challenges he was facing because my son also has similar struggles. Today was an unseasonably warm day at about 45 degrees especially considering yesterday was 8 degrees. That is just typical in Nebraska, so I was on cloud nine with the sun shining and such warm weather.

Tina only lives about 15 minutes away from me in Gretna. While I was driving over there, she called and said that she couldn't find her car in the parking lot at UNMC so it would be awhile. What is rather funny is that she called her husband who came over and showed her that it was parked right where she thought it was! I told her that when Henry had brain surgery in St. Louis, I went out to the parking garage and couldn't find my car and called him to come out of PICU right away because I was convinced someone had stolen our car during surgery. Jeff, who was a bit more level-headed walked me down a floor and there was our car. Let's just say I was thankful that Tina also lost her car in a hospital parking garage! haha...

One of the many pairs of cat shoes

I have to admit when I was drawing her, I kept messing up the eyes. This led her to tell me she had one eye bigger than the other. That might be true, but I finally realized I had not judged the distance between her eyes correctly. There is nothing worse than drawing someone's portrait and having them think there is something quirky with them! Honestly...this is why the fundamentals of drawing are so important. If one aspect of a portrait is wrong it just looks wrong. I don't want it to sort of look like Tina, I want it to simply look like her.

While I was growing impatient with myself and my drawing, Tina got up and to my surprise she had all sorts of snacks. What artist doesn't love snacks?! I am seriously a grown adult and I was giddy over a rice krispy bar with m&m's in it. She also sent snacks home for my boys. Fred's eyes lit up when he saw the salsa garden sun chips.

I knew I had to take a break from the charcoal portrait so we tried to figure out what to do for her oil painting. That is always tricky to do on the spot. Most people don't just want to be cleaning or doing something mundane. In the course of looking around the house, she shared her love for cat shoes. I had no idea that she collected shoes with designs of cats all over them. I didn't even know that was something a person could buy. I probably have maybe 10 pairs of shoes/boots total. I think Tina had about 7 pairs of shoes with cat designs on them!

I came home and put the portrait away and made dinner. After dinner I took it out again and knew what I had to do. So strange that a little time away helps me to look at something fresh and be able to fix it. I like it now and hopefully she does too. 

John Schafer - January 31, 2020 (Lincoln, Nebraska)

Drawn from life near their kitchen so as to get some of that nice morning light.

Today I drove down to Lincoln to draw John. I met his parents back in 2014 at the Cupid's Undie Run held in Omaha (money goes to CTF for NF research). This family has done so much to help raise NF awareness from holding online auctions for donations, participating in a marathon event in Lincoln, Racing for Research with CTF and the list goes on. Even with all of that, I still had never met John. He is a very handsome and charming young man. He has a dapper look and a very fun mustache that looks like he could either be a pirate or a poet (try to figure out that visual--haha).

We chatted about all sorts of things and interestingly NF was not really one of them. Although John did mention that his brain tumor has been stable for so long that he no longer has to do yearly MRIs. I thought I was going to fall out of my chair! Is that even possible? That seems like some sort of dream come true.

I was interested in his job at Target and his different discounts and whether or not he got a discount at the Starbucks located inside. He and Andy also talked about all of the different boy scout camps they attended and similar to my boys they also attended San Isobel Scout Ranch in Colorado. They went to the one in South Dakota that our troop was considering for this year too (although our troop picked a place in Minnesota). I was interested in his Eagle project as it is interesting that both he and my son are Eagle scouts.

Before I left, John showed me his impressive collection of vinyl. It is like some sort of flashback to see a bin of albums again! It made me think of my childhood and how I had to save up for my Journey album!

Emily Pfeiffer - January 8, 2020 (Lincoln, Nebraska)

Drawing done from life while sitting in my living room.

I had painted Emily's portrait a few years ago for a show that was coming up at Creighton University. Her mother, Sharon, had taken so many pictures that I just wasn't really interested in. During a conversation, her mom had told me how much they enjoyed the yearly neighborhood block party and all the games they'd play. We settling on Emily tossing a balloon as a fun and interesting painting.

"Emily Tossing a Water Balloon"
30" x 24". 2016. Oil on Canvas

When I reached out to Sharon to see if she and Emily would be interested in sitting for a portrait, I was so pleased to hear that not only could they sit for one, they had a lot of availability due to Sharon's retirement. I knew with the spring semester starting that I would just busier and busier so I asked if during the middle of the week (while my boys were at school) would work. As an added bonus, Sharon mentioned how much Emily enjoys going to the Westroads, so they would just drive up to Omaha. I have to admit, initially I wondered if they should drive to Creighton and sit in a formal studio, but then I thought...why not just come to my house?

I found it so relaxing to have another person present while drawing Emily. I am used to just drawing subjects one to one and at times it can get very quiet and I believe they can get sleepy. I sometimes can talk and draw simultaneously, but at other times I really like to be focused on what I need to do. What I found was that by having Sharon there to visit and tell stories, it allowed both Emily and I to relax and model and draw without having to keep up the conversation the entire time.

Sharon and I commiserated about some of the healthcare professionals out there (I won't name names) who do not seem to understand NF, nor do they believe the parent when he or she tries to explain what the tumors are and where they were located. A place in Lincoln actually told them both that Emily did not have a brain tumor because they couldn't see it on their MRI. She has a brain tumor and Sharon already knew this. They, of course, don't go to that facility for care. We had a similar experience at a facility in Omaha, so I've been there. It is so important to have a team of specialists that actually understand NF and sometimes that takes leaving your town.

It appears that Emily has had some hearing loss since I had painted her portrait in oil. She also has some balance issues that made me nervous with all the icy conditions on our driveway, but they did okay. 

When I finished the charcoal drawing Emily got a big smile on her face and immediately sent an image to her brother. I took this as a good sign that she liked it! I also think they were both off to do some shopping at Westroads Mall!

Dave Ware - December 17, 2019 (Lincoln, Nebraska)

Drawing done from life while sitting at David's apartment

I drove down to Lincoln, Nebraska as finals were wrapping up for Fall semester: December 17, 2019. It was a beautiful day, sunny and temperatures in the 40s, no winter weather which is a blessing this time of year. When I got to David's apartment, he was waiting for me and had a Coke ready!

I spent about 2.5 hours at his place drawing him and chatting. Growing up in Texas, David is the youngest of three sons and the only one in his family with NF. When he would ask his dad at what age he was diagnosed with NF his dad would just cryptically quip "You were born with it!" That seemed to be the extent that his father wanted to talk about his diagnosis. His brothers are in town, but they don't get together too often, mostly just at holidays.

Prep Sketch for possible larger drawing

David talked about how he got bullied as a youngster for his NF as not too much was known about it while he was growing up. He graduated from high school in 1973 and went on to get a business degree. After working for many years, he finally went on disability due to his NF. He currently has two inoperable brain tumors, depression, ADD and is on several medications due to his NF. He feels lucky to have a van in town that picks him up to take him to his local doctor appointments. He used to be able to drive, but he can no longer do that. He doesn't really miss driving that much, but he does miss the freedom that comes from being able to drive.

Because of his NF, he lost his eye and was recently outfitted with a glass eye. I, personally, think his glass eye looks amazing and it fits really well into the socket. He had been wanting one since he was a teenager, but no doctor wanted to take on the challenge of removing any good eye tissue. He finally met a doctor that would do it and he is so happy with the results.

As I was drawing his portrait, David told me that he had been married for awhile to a woman in Utah who also had NF as did her son. Unfortunately, the marriage did not last and David returned to Nebraska. They had met in a Facebook chatroom, but he has not gone back to the chatroom since.

David spends his time now enjoying his aquarium filled with colorful fish. He cares for his succulent plants and uses his window sill to line them up making a rainbow of color from the plant holders. He is currently looking for opportunities to showcase his photography skills as his apartment is adorned with all of his plant and fish photos. He is a big Husker football fan and loves Nebraska. When I drew his portrait from life, I told him he could sit in the chair I was sitting in if that was more comfortable than sitting on the couch. His couch is so comfortable that he told me he will often fall asleep right there instead of getting up and going to bed.

David allowed me to take several photos of him feeding the fish and just lounging on the couch. I typically paint 30" x 24" oil paintings of people with NF just doing what they enjoy so I may still do that painting, but there was something about the comfort of him laying so casually the entire time on the couch that got me thinking differently. Typically, when someone has never been drawn before from life, they ask me over and over again if they are sitting okay or if they should sit a different way. Not David. I told him to be comfortable and he did just that! It was a treat to draw him and I am thinking this sketch might either become an oil painting or large charcoal drawing.