ORLANDO, Fla. — An event this weekend is aiming to raise awareness and money for a cure for a rare medical condition.

  • “Central Florida Walk and Roll for the Cure” happening Saturday
  • The walk-a-thon is raising awareness of Chiari malformation
  • The event will be at Northwest Recreation complex in Apopka

Orlando Science School students and brothers Sean and Jayden Adair helped make posters for a Saturday walk-a-thon, which will raise awareness of a rare medical condition they both have — Chiari malformation.

“If I run too fast or do anything too hard, I’ll get a headache,” Jayden said.

Chiari malformation causes severe chronic headaches, among other symptoms.

Their mother Jeni Adair knows her son's pain well — she has the condition as well.

“I was in the emergency room for a headache that was just really, really bad. They took a CAT scan and the next day I got a call, and they said you need to see a neurosurgeon right away — you have something called Chiari malformation,” Adair said.

The condition eventually forced her to drop out of veterinary school.

 “I'd lost my career, I'd lost my health — Chiari took everything from me,” she said.

After being diagnosed, she had to get 18 surgeries in 8 years.

“I had given up on the idea of ever getting married or having children. I did not think that was a possibility for me,” she said.

But with the support of her husband, they started a family. She says it's helped her condition more than anything.

“There are times where I’ll have a really bad headache, and if it weren’t for the kids, I’d be in bed all day,” she said.

She founded the first “Central Florida Walk and Roll for the Cure” to raise money for Chiari research and awareness.

“There’s a reason why I’m doing this, looking at my kids,” Adair said.

She’s raising awareness of an invisible illness, while showing her sons they can be more than their disease.

“It’s just one part of who they are. There’s so much more to them,” she said.

Adair hopes the walk will become an annual Central Florida tradition.

The event will happen Saturday from 10 a.m. to 1 p.m. at the Northwest Recreation complex in Apopka.