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MANY FACES OF NF IN TENNESSEE
MANY FACES OF NF
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"Patricia Relaying for Life" © Rachel Mindrup - 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.
Patricia had breast cancer and had a mastectomy 6 weeks before her daughter, Amber died from her NF related brain cancer. Amber was only 14 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.
"Amber Alexander" © Rachel Mindrup - 2014
Completed February 4, 2014
24" x 18"
In Memoriam, 1985 - 2010
"Jason Stripping Copper Wire" © Rachel Mindrup - 2020
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.
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.
"Ted Practicing Law" © Rachel Mindrup - 2021
Ted Goodman, lives in Murfreesboro, Tennessee, with his wife, Kelly, and son Will. Ted has NF1 and scoliosis that is often associated with NF. Ted wore a back brace from the age of 14 to 20. Though Ted had several NF tumors removed as a child, he was not formally diagnosed until he was 25 years old.
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 which revealed two NF tumors located at C1 and C2. 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. 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.
While recovering, Ted studied for the bar exam. He returned to his native Murfreesboro, married Kelly, 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.
Ted’s neurologist, Dr. Paul Moots, created a non-profit corporation to provide support for NF patients, their families, and public awareness initiatives called 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. Besides serving on a myriad of other community boards as well, Ted enjoys spending time on his family’s farm with his wife and son.
"Noah Taking Tickets" © Rachel Mindrup - 2021
Noah Hester was diagnosed with NF when he was five months old at a routine exam. 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. Three months after his diagnosis Noah’s arm started to twitch and his right side seemed weak. 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 at the Mayo Clinic and it was suggested as Moyamoya Syndrome. 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. His love of movies, sports and video games keep him entertained and very busy.
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.
"Max" © Rachel Mindrup - 2020
Max Edwards is in 3rd grade and is homeschooled. Along with NF1, Max has Tourette's Syndrome, small fiber neuropathy, chronic pain syndrome, tremors, feeding tube, gastroparesis, length discrepancies on the right side of his body, ADHD, neurogenic bladder, Chiari Malformation, tethered cord, immune compromised (IgA, IgG, and IgM) as well as global delay, speech issues, cognitive impairment. He currently has something going on that is representing itself like dementia. The family isn't sure what it is but Max's team is looking into it. Max has a wheelchair, AFO braces, a feeding tube, an activity chair, and a special (hospital like) bed to help him get through his day. Max is an absolute sweetheart. He is unbelievably strong in spirit and character. He loves to draw. He must have millions of Legos, and he's obsessed with horror. The family was at Levine's Children's Hospital in NC which then sent them to St. Judes. After a year, St. Judes sent them to Vanderbilt for their care.
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