SPRING HILL, Texas (KLTV) - A family in Spring Hill is hoping to bring awareness to their son’s rare muscle disorder as they wait for a cure.
At 3-years-old, Finn Florczykowski is still not showing any signs of the Duchenne Muscular Dystrophy (DMD) he was diagnosed with two years ago. The rare, aggressive genetic disease causes rapid muscular deterioration. There is currently no cure for DMD.
Finn’s mother, Paula Florczykowski’s, recalls when she learned her son was diagnosed with DMD at 9 months old.
“I just remember the sky was different, the clouds were different, the trees. I mean everything, just my perspective of life just changed," she said. "It was a difficult day. A difficult ride home.”
This disease is mostly found in boys, affecting 1 in 5,000. In many cases, they may lose the ability to walk and develop heart problems between the ages of 6 to 14. Finn’s father, Dan, explains how they’re expecting it to be difficult for him to keep up while playing with his friends in the coming years, but that’s not the only problem.
“That’s probably gonna be pretty tough for us as parents because you can’t really tell a 4 or 5-year-old ‘let me explain this disease that you have and how it’s gonna impact you,’ he just knows he can’t keep up,” he says.
The Florczykowski family has created a non-profit organization called, “Finn’s Friends,” to help bring awareness and raise money for research, family assistance programs, and even gene therapy trials. Finn’s Friends has done bracelet and t-shirt drives but they’re taking things up a level. At the end of the month, they’ve sold out tickets for a charity golf tournament in Finn’s honor to bring awareness and raise funds for DMD research.
Finn is taken to a DMD specialist in Boston, Massachusetts. They were scheduled to fly up again in September but transitioned into telehealth as a result of the pandemic.
Paula says they understand it’d be too risky making the trip saying, “It’s a Duchenne center, we know that COVID, I mean your muscles control your lungs and your heart so it would be catastrophic if a boy with Duchenne caught COVID.”
The next step for them will begin in February -- if Finn gets a clean bill of health from his doctor, he will begin a steroid regimen to prepare for a gene therapy trial. This isn’t a cure but it’s aimed to help Finn walk longer.