A family in Kansas City, Missouri, is desperately seeking a miracle to find a cure for their young son’s rare genetic disease.
Charlie Fry, a six-year-old boy, is facing a one-of-a-kind battle against a neurological disorder called SLC6A1. This disease is extremely rare, affecting only a small number of individuals worldwide.
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Kim Fry, Charlie’s mother, stated that SLC6A1 manifests as a seizure disorder, learning delays, and behavioral issues. This condition has also led to additional diagnoses, including ADHD and autism. It’s worth noting that Charlie is currently the only known child in Kansas City with this particular disorder.
The Fry family has devoted their lives to raising awareness and funding for finding a cure.
“We still feel the pain every step of the way,” expressed Kim Fry. “It’s heartbreaking to think about all the things he won’t get to do, while his sister gets to experience them, or the opportunities he may never have.”
According to her, they currently have numerous scientists across the globe who are conducting research and experiments to find a cure.
That is precisely why she and her family put in endless effort to raise funds and increase awareness in order to support these scientists.
Undoubtedly, this is their toughest battle, but it also brings them some of the sweetest rewards.
Nate Fry, Charlie’s father, expressed his gratitude for the support they received during the challenging times. He acknowledged the incredible unity and kindness demonstrated by the community, their friends, and even strangers. This collective response showcased the inherent goodness that resides within every individual.
As you drive down Kansas City’s 68th Terrace, adorned with festive decorations that proudly declare it as ‘Candy Cane Lane,’ the twinkling lights immediately catch your eye.
For years, the Fry family has been dedicated to decorating their home every year.
Little Addie Fry pays a special tribute to the Kansas City area’s celebrity power couple, Taylor Swift and Travis Kelce, with a flashing sign that says “83 + 13 = 100%”.
The Fry family adorned their lights with an additional heartfelt tribute to Charlie.
Nate Fry expressed that one of the main motivations behind their light displays is Charlie. Having Charlie contribute to the lights was an incredibly special experience for them.
These lights hold immense power as they come together to create a path, uniting the entire Candy Cane Lane.
Nate expressed his appreciation for the lights during this festive season, particularly with Christmas just around the corner. According to him, the lights play a crucial role in bringing everything together.
If you are interested in contributing to the team of scientists dedicated to finding a cure or want to gather more information about this uncommon genetic disorder, you can visit the website of SLC6A1 Connect.
You can also experience the beautiful lights and personally meet the family at a cookie sale happening from 6-8 p.m. on Thursday at 68th Terrace.
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