New Albany family raises awareness of neurofibromatosis
Jun. 5—NEW ALBANY — A New Albany family is raising awareness about a rare genetic disorder.
New Albany City Councilman Adam Dickey led an effort on behalf of his family for the community to recognize a condition called neurofibromatosis (NF). His wife, April, and his 13-year-old son, Ashton, both have NF.
Last month, Dickey sponsored a resolution to proclaim the month of May as Neurofibromatosis Awareness Month, which was approved unanimously by the New Albany City Council and signed by New Albany Mayor Jeff Gahan.
NF affects about 2.5 million people across the world, or 1 in every 3,000 births. The condition often causes tumors to grow on nerves, and it can affect development of the brain, cardiovascular systems, bones and skin.
The condition's effects vary from individual to individual, but it can cause blindness, deafness, disfigurement, bone abnormalities, learning disabilities, disabling pain and cancer.
"There's actually a lot of people across the country who have this," Dickey said.
Although April and Ashton have relatively mild cases of NF, the 13-year-old has monthly treatments at the Cincinnati Children's Hospital related to the condition. Ashton's NF led to the development of a tectal glioma, or a slow-growing, low-grade mass at the back of the brain stem.
"These are benign, slow-growing types of masses — they don't really themselves usually jeopardize the life of the person," Dickey said. "The problem with them is the real estate that they're in. They're in a confined space of the body, they're in a very important space of the body."
Ashton goes through a treatment that "essentially works to take those growth circuits and make sure they're turned off," Dickey said. This involves low-dose chemotherapy.
"What they want to see is that there is no growth or gets to a point where it declines and gets to a point where it's stable or in some cases goes away," he said.
He said the treatment seems to be working well, and doctors are confident that Ashton will grow up to live a "full life," Dickey said.
"So that's the good news, but as a parent, it's a little bit stressful obviously, because you have to run the course — like any disease or disorder that your child could get, you have to be educated and you have to get more information," he said.
In April's case, she had to have treatment as a child due to bone development issues caused by NF.
Ashton was going through treatment at the Cincinnati Children's Hospital when he learned that May was NF Awareness Month. He inspired Dickey to create the resolution to recognize the condition on a local level.
"That's really where the origin of the resolution came from — his interest to try and spread that word," Dickey said. "And from there, I think it was also trying to give voice to people who suffer from this every day in our community — and really others around the nation — and are largely unseen."
"It's one of those things that you have people who have it, and they go through life, and nobody ever knows, because their symptoms are very mild, they maybe don't have the fibromas or the other telltale signs, and then you have some who suffer from some debilitating condition," he said.
At the May 1 council meeting, Ashton said that "many people don't know about NF," but he wants to change that.
"It's important that those suffering [from NF] know that they have support and are valued," he said.
One of the goals is to support the mission of the Children's Tumor Foundation, which is focused on research and care for those with NF.
"I think that's another piece of this — not just bringing awareness but bringing awareness that's a call to action for folks to maybe consider things to help advance the study and research on this."
April noted that some people with NF may have visible signs of the condition such as fibroids that cover their bodies.
"So people may state, they may not know necessarily how to approach or ask the question that is comfortable or appropriate, so we are just trying to educate," she said.
People who see Ashton may not know that he has the condition, she said.
"In general, [I want] people to be aware and to be kind, because you never know what someone else is going through," April said. "Just be kind."
In telling their stories, the family has found that "there is a lot of support out there," Dickey said, and the council's resolution led to conversations about NF within the community.
"I have people who have seen me on the street and brought it up, and said, 'Hey, what was that about', and I think Ashton has also got a lot of kudos about it," he said.
