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posted: 8/28/2013 1:35 PM

Batavia man with muscular dystrophy celebrates 50th birthday

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  • Robin Hewitt of Batavia, who has Duchenne muscular dystrophy, recently turned 50. Many people with his disease don't live much past 20. "My days are pretty full, and I enjoy the time I get to spend with my friends," Hewitt says.

       Robin Hewitt of Batavia, who has Duchenne muscular dystrophy, recently turned 50. Many people with his disease don't live much past 20. "My days are pretty full, and I enjoy the time I get to spend with my friends," Hewitt says.
    Rick West | Staff Photographer

 
 

If someone turns 90, it's awesome. Ninety-five is even better. One hundred is big news.

Fifty? Not so much.

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Yet Dan Sladek sent out 10 news releases to Chicago area papers to announce the celebration of Robin Hewitt's 50th birthday because he felt it was really big news.

As a former district director with the Muscular Dystrophy Association in Aurora, Sladek knew that Hewitt, who has Duchenne muscular dystrophy, a genetic disorder characterized by progressive muscle degeneration and weakness, had far surpassed the average life expectancy -- many with this disease do not live past their mid-20s. The Batavia resident is somewhat of a medical miracle.

"Robin is amazing," Sladek said. "I don't know anyone who has such a will to live."

It hasn't been easy for Hewitt. On one hospital visit, he coded and fought to come back. He also had to fight through the emotional battle of seeing his older brother, Jeff, succumb to the same disease in 1986.

"Even though he was seven years older, my brother and I did everything together," Hewitt said. "It was really tough when he died."

Hewitt found that being blessed with good friends was just what he needed.

"After my brother died, Dan Sladek came to me and said that he was there to help me get through it, to help me go on living," he added.

Hewitt is definitely determined. When the insurance company told him that they would be discontinuing his coverage, he didn't just start writing letters to the company, he wrote to congressmen and senators. His insurance was reinstated.

Three years ago, he moved into his own apartment. Although he has 24-hour nursing care, he values the independence.

With a portable ventilator, he can do his own grocery shopping, go to movies and enjoy the outdoors along Batavia's Riverwalk.

Of course, that means he also does daily tasks like cooking and laundry, but he doesn't mind.

He and a friend also ran a lawn care business for six years. Hewitt handled books and the scheduling.

Then the downturn in the economy happened and their business suffered.

"Still, my days are pretty full," Hewitt said. "And I enjoy the time I get to spend with my friends."

Those friends were the ones who threw the 50th birthday party for him. Twenty-five people surprised him at a friend's house.

"I am pretty observant but I had no idea that they were doing it." he said. "When I went into the living room I looked around and thought, 'Who are all these people?' Then I realized they were all people I knew."

Hewitt's friends have always been there for him and have been a source of strength and support.

"I really appreciate that," Hewitt said. "Dan (Sladek) has been like a brother to me. Even though he lives in Florida now, I know he'll always be there for me."

When he was younger, Hewitt participated in the MDA telethon that takes place over the Labor Day weekend.

"Most of the money raised through the telethon goes toward research," he said. "I am amazed at the advances that have been made during my lifetime. Hopefully, someday they'll find a cure."

• The MDA "Show of Strength" Telethon will air at 8 p.m. Sunday, Sept. 1, on ABC-7.

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