KANSAS CITY, Mo. — A family in the Northland is using the stay-at-home order to launch a new challenge aimed at bringing awareness to a rare disease their toddler is fighting.
It may not be obvious when you meet him, but 2-year-old Charlie is living with a neurological condition that’s so rare it doesn’t have an official name.
“It is SLC6A1, and that’s just the name of a gene that has a mutation, and it causes severe disabilities in learning, movement disorder, autism and debilitating seizures,” his mom, Kimberly Fry, explained.
Fry said there’s only about 100 known cases of SLC6A1 in the world. Charlie was diagnosed with it last fall after suffering severe tremors and failing to reach basic milestones.
“The doctors know very little, so it’s overwhelmingly devastating,” Fry said. “Kids, as they progress in our network, it becomes more severe and noticeable.”
The Fry family has raised more than $100,000 to help find a cure for their son’s rare diagnosis.
However, since they can’t host public events and fundraisers because of COVID-19, they’ve turned to a challenge they call “Home Cuts for A Cure.”
“I think everyone needs haircuts, and we wanted to do something light-hearted during this time,” Fry said.
It’s simple: Give someone in your family a haircut, then challenge three other people to do the same. For every haircut someone gives, the Frys ask the person to donate $25 to SLC6A1 Connect, a nonprofit focused on finding a cure for the disease.
They’re also asking donors to record the haircut and upload the video to social media, using #HomeCutsForACure.
“In order to transfer the research they’re doing in the lab to clinical trials or a cure, we need to raise $3 million,” Charlie’s mom explained.
His parents are hoping their challenge becomes a viral charity movement like “Movember” or the wildly popular “Ice Bucket Challenge” from 2014.
“I’m not willing to stop until we have a cure for Charlie,” Fry said.