Noah's Number 1 Fans

Thiry-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 we 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 us it was nothing. However, the next morning his entire right side became involved. By the end of the following week, we 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 our request, our pediatrician tracked down and arranged for us to visit NF expert, Mary Zupanc at the Mayo Clinic (in 1993 the internet was not available as a tool for us). Dr. Zupanc ordered an angiogram and it suggested Moyamoya Syndrome. And so, we 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 us hope that the strokes are 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.

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? 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 here to middle Tennessee. And in 2010 Vanderbilt opened its very on NF Clinic. 

We owe so much to NF Tennessee and hope to continue to support their effort and do everything we can to ensure their success.