The energetic 3-year-old boy toddled around the living room of his Longview home with a blanket over his head, announcing he was a ghost.
Finn Florczykowski’s mother explained that he is excited for Halloween since he is now old enough to be aware of the holiday.
Over time, Finn will lose the ability to walk and also lose mobility in his arms and legs due to Duchenne muscular dystrophy, a rare and aggressive genetic disease that causes rapid muscular deterioration.
“He’s energetic, sassy, and he’s so smart,” Finn’s mother, Paula, said, laughing. “He’s everyone’s baby, so he’s super spoiled.”
Finn pulled blankets out of a cupboard, throwing them over his head to play ghost and attack his parents.
“We want everyone to know his name,” Paula said, picking him up.
Finn was born Sept. 13, 2017, and diagnosed with the disease when he was about 9 months old.
“He had no symptoms,” Paula said. “He was in the NICU for high liver enzymes, which is not a sign. And he had some esophagus issues, which is also not a sign, but the pediatrician told us we should go and test him.”
Paula was not worried about the test, she said.
“I was in the Target parking lot when she called me,” Paula said. “It was devastating.”
Everything changed that day on the drive back to their former home in Diana, she said.
“Our perspective of how short and how terminal we all are,” Paula said. “I’ve always said from day one, we’re all terminal — we’ll never know when we’re going to go.”
Since Finn’s diagnosis, the family’s life slowed down, especially during the pandemic.
“It’s been a blessing, I mean, we’ve grown closer as a family,” Paula said, laughing. “We’ve just cherished every moment, and we’ve counted every hair on his head.”
Finn has an older sister and brother, neither with the same condition.
“This isn’t like he’s got a little cold or something,” said his father, Dan Florczekowski.
DMD is incurable and irreversible. The disease typically affects boys and is similar to ALS in adults.
Finn is not showing any delays or developmental issues other than some calf swelling, Paula said.
“You look out 10 years, it’s hard, it’s not easy to stomach,” Dan said. “They look great and then they end up losing mobility around 8 to 12 years old. Then between, usually around age 16 is when the deterioration really hits their lungs and hearts.”
The disease eventually destroys the muscles that control the heart and lungs, which makes it fatal.
“That’s the hard part to talk about,” Dan said. “Fifteen or 20 years ago, getting this was a death sentence. You were basically told by specialists to go home and love on your kid for 20 years, 18 to 24 years.”
Dan added that through advancements in treatment and a comprehensive approach, the average lifespan for a child with DMD is extended by 10 years.
“Hopefully, the next thing is gene therapy treatments,” Dan said. “They might go out even farther than that. We hope.”
Finn sees a specialist in Massachusetts and is preparing for aggressive steroid treatment in an attempt to slow the disease.
“They want us to do a gene therapy trial next September,” Paula said. “In order for him to qualify for that trial, he has to be on steroids for six months.”
The plan is to go to Boston in February and begin the steroid treatments.
“We’re fighting time,” Paula said.
Paula and Dan noticed that many people did not know about the disease or only knew a little about muscular dystrophy in general. The family wants to raise awareness of the condition and do what they can to raise funds for research into treatment and a cure.
“From day one, when he was diagnosed, we very much knew we were going to start a nonprofit,” Paula said.
They started Finns Friends as a nonprofit organization and started fundraising by selling bracelets and T-shirts.
“The support from the community for his little organization has been overwhelming,” Dan said. “I got home last night and there was a $1,000 check in the mail. A donation.”
The couple joined with and donates to Team Joseph, a nonprofit organization in Detroit that funds research to find a treatment or cure for DMD.
The first Finn’s Friends Golf Tournament is set Saturday at Tempest Golf Club in Gladewater. Part of the funds raised by the tournament will go to Team Joseph, which also provides a family assistance program.
“We definitely, 100 percent, know that we have been super blessed with being able to go and see the best doctors and specialists,” Paula said. “We’ve met families who can’t even afford a mattress, you know, and so our heart has been helping basic needs children who have Duchenne and their families.”
What will Finn be doing during the tournament?
“Just telling everybody what to do,” Paula said, smiling. “Chasing everybody with his ghost costume.”
Follow Finn’s story on Facebook at www.facebook.com/finnsfriendsdmd or on Instagram @finnsfriendsdmd.