Case Study #98 - Keith Thinking about Life

"Keith Thinking about Life" Oil on Canvas. 30" x 24"

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.

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.

"Keith Thinking about Life" prep sketch

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."

Case Study #97 - Seth Playing the Piano

 

"Seth Playing the Piano" Oil on Canvas. 30" x 24" 2021.

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. 

Prep Sketch

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. 

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.

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. 

Prep Sketch

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.

Prep Sketch

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.

Prep Sketch

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.

Prep Sketch

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.