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Heartbreak to hope for family after young boy is diagnosed with muscular dystrophy

Duchenne muscular dystrophy is a genetic disorder, typically in boys, that causes the muscles to become weak. It's progressive, meaning it gets worse as you age.

ST. LOUIS — As far as 10-year-old Dean Alesi is concerned, the best gift his parents ever gave him was his little brother.

"Dean has wanted a brother or sister since he was like 3 or 4," his mom Amber said.

"It's just such a sweet thing to see the two of them interact with each other," she said.

In the Alesi house, there's never an energy shortage. Even though Holden is just 17 months old, he tries to always keep up with his big brother.

"From the time that he was just a little baby, a couple weeks old, we joked around how we shouldn't have named him Holden. Because you could never set him down," his dad Rob Alesi said with a laugh.

This brotherly love is comforting for mom and dad because their closeness today may be Holden's strength tomorrow.

When Holden was just an infant, he fell ill on a family vacation.

''He had a virus and just didn't seem to be getting better," Rob said.

One test led to another and then another and then another. And finally a diagnosis.

"We both just sobbed and burst into tears," Amber remembered.

Three words changed the Alesis' lives: Duchenne muscular dystrophy.

When asked about what they knew about the disorder:

"Not a lot, honestly. I mean, I knew probably what 99% of other people tell you Mike," said Rob. "The Jerry Lewis telethon."

Duchenne muscular dystrophy is a genetic disorder, typically in boys, that causes the muscles to become weak. It's progressive, meaning it gets worse as you get older.

"What scares you?" we asked mom.

"My son dying before me," said Amber. "I don't wanna watch him get sick."

But with this family, Duchenne dystrophy is in for a fight.

At the MDA Walk in the spring, a group of friends and family called "Holden's Heroes" helped raise $10,000 for the Muscular Dystrophy Association. And MDA is helping to fund some promising new drugs that actually rebuild muscle tissue.

"I have to be hopeful," Amber said. "There's no other way to look at it. Like, I can't scare myself into inaction or into just pretending, like it's not there and like it doesn't exist. I have to be hopeful."

That's why around here, the day and the hour is always now.

"You know, honestly, Mike, I try not to focus too much on anything past today," Rob said.

He doesn't know it yet, but here's one young boy who won't face his challenges alone. Because his parents and big brother are watching.

The Alesi family will be joining us for this year's "Show of Strength" telethon next Sunday, Sept/ 4 at Grant's Farm.

Mike Bush hosts for the 36th year and will be joined by Scott Connell, Anne Allred and Rene Knott along with all sorts of special guests.

You can Watch live from 8 to 10 p.m. on 5 On Your Side, on KSDK.com or on 5+ on your Roku or Fire TV.

All money raised during the telethon goes to people with neuromuscular diseases in the St. Louis area.

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