SPRING HILL, Texas (KLTV) - The Florczykowski family has made it their mission to bring awareness to the rare muscular disease their youngest son, Finn, is fighting.
They’ve created a non-profit organization in his honor called, Finn’s Friends, to fundraise for research and bring raise awareness for Duchenne’s Muscular Dystrophy. They’re preparing to make some big steps toward his treatment and his school is supporting them every step of the way.
Alpine Christian Academy in Longview celebrated “Go Green for Finn Day” -- day where kids and teachers wear green and eat green Jell-O in support of one of their students, three-year-old Finn Florczykowski.
“To someone that doesn’t know what’s going on, they would think he’s a normal boy and that’s the nature of this disease, it really doesn’t set it in. The physical expression doesn’t really set in until 5, 6, and 7,” says Finn’s father, Dan.
When Finn was 9 months old, he was diagnosed with Duchenne’s Muscular Dystrophy or DMD. This is when the body lacks the protein Dystrophin. This can result in the muscles wasting away over time and, eventually, resulting in the loss of limb movement and the use other vital muscles.
“Then of course your heart is a muscle, and your lungs are controlled by muscles so it’ll prove fatal over time,” says Paula, Finn’s mother.
Despite this disease, to the kids in his class, Finn is just another one of their friends. One of his teachers says students pick up on things like Finn running a little slower or getting tired, but that they’re always by his side.
Megan Hensel, Finn’s teacher since September, says “when we go to the gym and we’re doing races back and forth his friends will slow down and hold his hand.”
Finn’s classmates aren’t his only source of support. Last October the Florczykoski’s hosted a “Finn’s Friends Golf Tournament” that raised over $65,000.
Some of the money they earned during their golf tournament fundraiser went toward Charlie’s Fund, this is an organization that funds the DMD clinic in Boston. They also donated to Team Joseph and individual families that have a child fighting Duchenne’s Muscular Dystrophy who needs assistance.
“On a larger level the golf tournament, the support we had for that was incredible,” says Dan. “So to see it on a day to day basis at his school, it just makes it a little easier to let him out of the car and go to school everyday.”
They plan on seeing a DMD specialist in Boston this March so that Finn can begin a steroid regimen. This is required for the gene therapy trial the Florczykowski’s hope to put him on later this year to preserve his ability to walk. What normally would be a few day trip has turned into 12 days because of the pandemic. Most of their time will be spent in quarantine before meeting with the specialist and then flying back home.