Man with muscular dystrophy celebrates 25 years

Posted Oct. 08, 2010, at 5:48 p.m.

Congratulations to Adam McDonald of Presque Isle and his many friends and supporters from all over Maine who helped make his 25th birthday wish come true.

Adam, a former Muscular Dystrophy Association Goodwill Ambassador and MDA poster child in South Carolina and Maine, was diagnosed in 1990 with Duchenne muscular dystrophy.

According to facts on the MDA website, Duchenne is one of nine types of muscular dystrophy and is a genetic, degenerative disease primarily affecting voluntary muscles. It begins in early childhood and eventually affects all voluntary muscles, including the heart and breathing muscles.

Adam’s 25th birthday is Wednesday, Oct. 20, and his wish was to raise $2,500 for CureDuchenne, which, according to the Internet, is a nonprofit organization based in Orange County, Calif.

CureDuchenne is dedicated to raising awareness of and finding a cure for the disease that affects one in 3,500 boys worldwide and for which there is no cure.

Adam started this project last year, his mother Cheryl Markey told me, when he tried to raise $2,400 for CureDuchenne and came woefully short, raising only $350.

But this determined young man, who has outlived and exceeded most expectations for someone with Duchenne, wouldn’t quit.

He simply restarted his project and, with help from his Facebook friends, hometown supporters, a television appearance and responses from folks throughout the Pine Tree State, surpassed his goal this week.

He’ll keep adding to it, thanks to a benefit in honor of his birthday.

The public is invited to attend a buffet dinner for CureDuchenne and wish Adam a happy 25th birthday at 5 p.m. Saturday, Oct. 16, at the newly renovated Crow’s Nest restaurant and event center at 150 Maysville Road in Presque Isle.

Admission is $20 for adults, free for children under age 7, Cheryl told me, with $8 paying for the meal and the remaining amount benefiting CureDuchenne.

For information, call the Crow’s Nest at 540-1800.

“The more we get the better it will be for CureDuchenne,” Cheryl said of the fundraiser.

Adam’s story is quite remarkable in that most people with his disease do not live this long, or this well.

This Labor Day weekend, for example, Adam and Cheryl celebrated their 20th anniversary of volunteering for the WABI-TV5 MDA telethon.

The life expectancy for those with Duchenne is usually 15-16 years, Cheryl said, but with each passing year new medications and treatments are helping some, such as Adam, continue to be active and contributing members of society.

“Adam is now on three different heart medications, he has a cough-assist machine that helps him cough, and the doctors have more knowledge today,” Cheryl said of the medical progress that is helping keep Adam alive.

I first wrote about Adam in 2001 when he and his friends were raising money to obtain a handicapped-adapted bicycle.

When he outgrew that bicycle, some folks thought he should sell it, Cheryl said. “But he wouldn’t.”

Adam’s feeling was that friends helped him raise money for the bicycle and it should go to someone else who had a disability, which it did.

With his mother’s help, Adam has been keeping busy working and raising money for MDA.

Back in 2006 they became Home Interiors consultants “and we would send 50 percent of our profit to MDA, some to Parent Project MDA and CureDuchenne,” Cheryl said.

For that effort, after having been in business only six months, they were flown to Texas to receive the Home Interiors Service With a Heart award.

Adam also collects soda can pull tabs and donates those proceeds to Ronald McDonald House in Bangor, a place where he and his mother have stayed on occasion.

Happily, Adam is able to fully participate in the time-honored Maine tradition of hunting and fishing by using special adaptive equipment.

“He is able to get out and about; his spirits are good,” his mother said.

“We even adapted a kayak with a headrest for him. We try to keep him out and busy.”

Adam and his family are most grateful for all the support and encouragement they have received and are looking forward to celebrating another wonderful birthday.

Joni Averill, Bangor Daily News, P.O. Box 1329, Bangor 04402; javerill@bangordailynews.com; 990-8288.

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