Case Study #96 - Marcy Decorating the Tree

"Marcy Decorating the Tree" Oil on Canvas. 2021

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. 

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.

Marcy Decorating the Tree

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).

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.

Case Study #95 - Ricky Preserving Liberty

"Ricky Preserving Liberty" Oil on Canvas. 2021

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. 

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. 

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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.

Case Study #94 - Jay Never Giving Up

"Jay Never Giving Up" 30" x 24" Oil on Canvas.

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). 

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.

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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.

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!