KANSAS CITY, Mo. — A Kansas City, Missouri, family is searching for a miracle to find a cure for their young son’s rare genetic disease.
The disease, known as SLC6A1, is a neurological disorder that affects fewer than 300 people across the world. Charlie Fry is a unique six-year-old kid with a unique battle.
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“SLC6A1 does present itself as a seizure disorder, learning delays, behavioral issues, and it's kind of spiraled into other diagnosis, such as ADHD and autism," Kim Fry, Charlie's mom, said. "He is the only known child here in Kansas City with it.”
The Fry family is dedicating their life to raising awareness and funding for a cure.
“We're grieving still every step of the way," Kim Fry said. "The things he doesn't get to do, that his sister gets to do, or the experiences that maybe he'll never have.”
She said now, they have hundreds of scientists all over the world researching and testing methods for a cure.
It's why she and her family work tirelessly to raise money and awareness to support these scientists.
This, undoubtedly their toughest battle, also brings them some of the sweetest rewards.
“I think through the dark times, the way that the community and our friends and even complete strangers have rallied around us — it really shows the good nature inside of everybody," Nate Fry, Charlie's father, said.
When you drive down Kansas City’s 68th Terrace, marked with decor that reads 'Candy Cane Lane,' it’s easy to spot the lights.
The Fry family said they've been decorating every year for years.
You can’t miss little Addie Fry's special tribute to the Kansas City area's celebrity power couple, either, with a flashing sign that reads "87 + 13 = 100%," in honor of Taylor Swift and Travis Kelce.
The Fry family also put up these lights with another special tribute to Charlie.
“A lot of the reason why we do these lights is for Charlie, and for him to actually contribute to it was a special feeling," Nate Fry said.
There’s power in these lights. They form a path, bring candy cane lane together.
“At a time of year like this when Christmas is coming up, I think the lights really tie this together," Nate said.
If you’d like to donate to the team of scientists working toward a cure, or to learn more about this rare genetic disease, you can visit SLC6A1 Connect's website.
You can also see the lights and meet the family yourself at a cookie sale from 6-8 p.m. Thursday at 68th Terrace.
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