By SARA ARTHURS
Neurofibromatosis is more prevalent than cystic fibrosis, Duchenne muscular dystrophy and Huntington’s disease combined, affecting more than 125,000 Americans, said Larry Gossard. But most people aren’t familiar with it.
Ohio is trying to change that.
In March, Gov. John Kasich signed legislation making Ohio the first state to recognize May as Neurofibromatosis (NF) Awareness Month. The legislation was sponsored by state Rep. Robert Sprague, R-Findlay, and was inspired by the politician’s conversations with Gossard, a Hardin County father of a child with NF.
NF causes tumor growth in the cells that surround and make up nerves throughout the body. The disorder affects over 1 in every 3,000 newborn babies and can result in skeletal defects, learning disabilities, disfigurement, cardiovascular problems, cancer, and loss of sight and hearing.
Gossard said tumors in the brain are common, as well as in the spine and in the optic nerve. The illness can also cause seizures, headaches, severe pain, itching, bone deformities, developmental delays, low muscle tone, and developmental or behavior difficulties, he said.
Nearly 4,000 people in Ohio are affected by NF. There is no cure.
Gossard said many children aren’t diagnosed with NF until they are 7 or 8 years old, when because of developmental delays they begin having issues at school.
Gossard’s son, Bryce Wells-Gossard, who turns 11 in July, was diagnosed with NF type 1 at just 10 months old. Bryce’s parents noticed some spots that they thought were birthmarks, but their pediatrician encouraged genetic testing. In Bryce’s case, it was a spontaneous genetic mutation — there is no history on either side of his family.
“It just happened for no reason,” Gossard said.
Bryce has a few tumors, but has his related attention deficit disorder under control. He is now attending third grade and is “doing very well,” his father said.
Still, Bryce has to see a lot of specialists. Gossard said Cincinnati Children’s Hospital happens to be one of the best NF clinics in the nation.
Gossard coordinates an annual event, Cruise-In For a Cure, which raises funds for the Children’s Tumor Foundation.
Sprague met Gossard at the Hardin County Courthouse, where Gossard works in the prosecutor’s office. Then Sprague got to know Bryce, who he called “just a great, great kid.”
Sprague said he didn’t realize until he talked to Gossard that NF is fairly common, but doesn’t get the same attention as other illnesses. Sprague learned that raising awareness in Ohio might lead to more money being dedicated toward research and finding a cure. He introduced legislation in late 2016, but then the legislative session ended. Sprague reintroduced the bill in 2017.
Gossard said he went to Columbus to testify in support of the bill, where he learned a lot of legislators had never heard of NF.
“It’s hard even for people to pronounce, if they’re not used to it,” he said.
Gossard said it’s “just devastating” for a parent to learn their child has an illness for which there is no treatment or cure. He said it is gaining in awareness, though, and he thinks Ohioans are talking more about NF this May than in years past.
The Hardin County Courthouse is lit up with blue and green lights every May 17, which is World NF Awareness Day. Gossard said the courthouse is one of about 200 participating monuments, buildings and bridges all over the world.