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One step at a time: How a father & son are overcoming a rare diagnosis

Posted at 11:30 PM, Feb 20, 2020

(WKBW) — At Chestnut Ridge Park, you may spot a Tonawanda father - son duo on the trails.

"The (Erie) County park system I think is a local gem and I don't know if enough people realize that," Anthony Parisi said. It doesn't matter if it's cold and snowy, Anthony and his two-year-old son, James, will be out for a walk.

"I just like spending the time outdoors myself and I knew I wanted to get him with me," Anthony said.

If it isn't Chestnut Ridge, it's Hunter's Creek or the neighborhood cul de sac with their dog in tow. Anthony carries James on hikes, sometimes as far as four miles.

"No where is off limits. We try to expose him to as much as we can," he said.

"(He) can't carry weight on his legs or arms. He'll never walk...This sort of is our way of kind of getting out and walking together," he said.

At five months old, James was diagnosed with a rare form of congenital muscular dystrophy (CMD) called LAMA2. There is no cure right now.

"It just means a lot getting him out here with me and it helps keep him healthy and happy and me likewise, as well," he said.

Bringing awareness to the disease and groups like Cure CMD is the Parisi family's mission.

"The more awareness we can raise and bring to the condition, the greater the chances funds are raised, research is driven...to ultimately find a cure that we're looking for," he said.

One step at a time, there are many miles yet to come.

"I can't wait and we're certainly not stopping here," Anthony said.