Virginia family launches high-five challenge to raise funds for toddler's ultra-rare disease

Virginia toddler's battle with ultra-rare disease sparks high-five fundraising drive

A child fighting an ultra-rare disorder and a family refusing to give up hope. FOX 5's Josh Rosenthal reports from Fauquier County with more from a mom and dad who say they're fighting for their daughter's life.

SUMERDUCK, Va. - Rowan Wilbur turns 2 years old next week. Her parents said she’s in a race against time.

"At first, the parenting journey was fairly straightforward," mom Alyson said Wednesday. "I remember thinking, like, ‘wow we’re really good at this. Everything feels under control.’"

But soon, things changed.

Photo via family

Rowan could hold herself up and dance with dad Nick – until she couldn’t. She could push herself up with Alyson cheering her on – until that changed, too.

"When she was about a year and a half, her eyes started crossing, and that’s when you saw at appointments, red flags coming up," Alyson recalled.

At 19 months, Rowan was diagnosed with Infantile Neuroaxonal Dystrophy, or INAD. It causes rapid neurologic deterioration in children.

"They sit down, and they start to tell you all of the things that can go wrong," Alyson said of the diagnosis. "It’s like every body part. I mean it was a list of maybe 10 things, and they just say this is what will happen to her eyes, this is what will happen to her arms, this is what will happen to her legs, this is what will happen to her feeding, and I think we maybe made it to seven of the 10 items, and I started crying, and then our genetic counselor started crying, and that’s when you know it’s, it was just really a rough appointment."

Photo via family

"It is ultra-rare," said Neurologist Dr. Laura Tochen, part of a large team of specialists treating Rowan at Children’s National Hospital. "Some kids might not be able to learn how to sit or crawl or walk, and some that are able to learn to do those things, lose those things over time."

Photo via family

And because INAD is so rare, it makes it incredibly difficult to find a cure.

"A lot of rare conditions do depend on patient and family fundraising efforts to move research forward," Tochen said.

That’s what led the Wilbur family to the Give 5 Challenge.

"We sat down and made a brainstorm list of all the things that Rowan either likes to do or can do, enjoys in some way, and one of those pairings was waving and high-fiving," Alyson said.

Photo via family

Now, they hope everyone will join in by donating $5 to the INAD Cure Foundation, posting a high-five video to social media, and then tagging five friends to hopefully, do the same.

"This is the only thing that we can do," Nick explained. "So, we’ve put all of our soul and our heart into trying to get as much money as we can raise, and again, it’s a fight against time."

If you’d like to help, you can donate as part of the Give 5 Challenge here.