KSHB 41 reporter Olivia Acree covers portions of Johnson County, Kansas. A viewer reached out to KSHB about this story, so Olivia sat down with the family. Share your story idea with Olivia.
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We are one week away from Christmas, making this the last weekend to take in holiday festivities. If you need something to do Friday night, there's a street in Brookside with a light display you won't want to miss.
This street looks like it's from a movie or a child's dreams. In a way, it is. Candy Cane Lane has been an Armour Fields neighborhood staple for a while, but this particular home goes all out for a great cause.
Kim and Nate Fry's 8-year-old son has lived his life with a very rare genetic disorder called SLC6A1. On the outside he looks like any other kid, but the disorder causes Charlie to have epilepsy, behavioral challenges and a mix of different neurological disorders that haven't made life very easy.
But there is a new treatment, which is why this year's fundraising is extra important to them and the organization they started because of him.
"Our first kid was actually with SLC6A1 was just treated with gene therapy that we funded," Kim Fry said. "He's doing great. So, we are trying now to get the next generation of kids to have gene therapy, including Charlie.”
If you want to see some Christmas magic, Friday night the family will be selling hot cocoa and cookies from 6 to 8 p.m. Every single dollar goes towards funding treatment so Charlie and the other 500 kids in the world with this disorder can live a better life.
"This is an opportunity to really give us hope and bring about change in a meaningful way," Fry said.
This story was reported on-air by a journalist and has been converted to this platform with the assistance of AI. Our editorial team verifies all reporting on all platforms for fairness and accuracy.
Donate to A Cure for Charlie here.
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