South Florida family hopes to bring awareness and find cure for Duchenne muscular dystrophy
MIAMI — They want to save the lives of their boys and others who suffer from Duchenne muscular dystrophy. Many with the disease lose their lives in their late 20s. And, that's why the Finazzo family works so hard to alter fate.
CBS News Miami's Joe Gorchow spent time this week with the family.
"Can you hear me?" asked Chase, the oldest brother, speaking into a walkie-talkie to his younger brother, sitting on a comfy seat in their shared bedroom.
"Hi, Chase!" replied his younger brother Dylan.
Dylan and Chase are inseparable.
"They're goofy crew," shared Susan Finazzo, the boys' mother. "They are really sweet, active little boys."
Dylan is six and Chase is a high-energy nine-year-old. And from what we found out, they're both incredibly bright.
"Blue whale!" exclaimed Dylan, pointing to a book about sea creatures.
"It's bigger than a dinosaur!" added Chase.
With a big smile, Gorchow looked at their dad, Chris, and shared: "They're fun to be around — full of personality and spirit."
"They're full of personality, they're full of life," Chris quickly chimed in. "They're normal, happy and healthy boys. The way people describe Duchenne is like a sunny day today, right? But, you know that there is a category-five storm that's coming, and you're right in its path."
In early 2020, Chase was diagnosed with Duchenne muscular dystrophy.
"While he was at kindergarten, we noticed that he was a little weaker than the other kids," Chris mentioned.
After months of testing, the family learned both boys had the genetic degenerative neuromuscular disease that is 100% fatal. Only 300,000 children and young adults live with it worldwide. There's no known cure.
"Suddenly, start mourning the life you thought you were giving them," said mom Susan. "It just hit hard."
"We can crumble under the weight of knowing that we're probably going to outlive our children, which is, as a parent, is the worst news you can ever get in your entire life," said Chris. "Or we can take this as our mission, and we can say that this disease picked the wrong family."
Soon after, a race for the best treatments and therapies began.
"They're poked and prodded at, and you know, to me, it's like a, you know, that's the difficult part," said Chris.
"We end up getting psychologists involved and training him just to normalize it and not make it such a big deal and a lot of rewards," mentioned Susan. "And now, I mean, they are such champs."
"Chameleon at Legoland," shared a proud Chase to the camera, showing a very cool stuffed animal in the bedroom.
"I got a dinosaur," younger brother Dylan quickly exclaimed.
"The way that we've approached this is to say, look, your bodies are a little different than everybody else's," said Chris. "It doesn't mean that there's anything wrong with you."
"Do you allow yourself to think about the future, or do you try to stay in the present?" Gorchow asked Susan
"Oh, no, I absolutely think about the future," she answered. "I mean, I have to plan for the future because their bodies are gonna keep changing."
Part of that future is fighting to find a cure.
"Raise awareness, to help, raise money to that will have a cure for this disease in my lifetime," said Chris.
"They will be cured," Susan said. "So, I mean, I have no doubt."
Belief fuels every day.
"Eventually, we will be in wheelchairs, and eventually, this disease will be fatal," said Chris. "That's exactly what we're here to prevent."
Johns Hopkins Medicine says the disease mostly affects boys. And many diagnosed with Duchenne lose the ability to walk around the age of 12, according to CureDuchenne.
"Make sure that another family doesn't have to feel that feeling ever again," Susan said.
And while the family pushes toward a cure, mom always has her boys close to her heart.
"What does that necklace mean to you?" Gorchow said.
"Oh, everything," said Susan, pointing to her two boys' names on a necklace that always sits around her neck. "That was my heart right there. Those are my... those are my everything."
On March 9, they'll host their third annual "Champions in Miami" in Miami Beach. Since 2021, the Miami community has raised over $2 million to support the foundation. All proceeds benefit CureDuchenne's research, patient care, and work to improve and extend the life of those with this rare disease.
To support their efforts, go to cureduchenne.org.
