MDA raises $422,000, surpassing telethon goal

Allen Piercy is acutely aware of a fact that should always be outside the realm of possibility for any 9-year-old.

He is terminally ill.

"I'm going fast," he said matter-of-factly Monday, confined by a wheelchair and muscular dystrophy. He seemed unaware of the haunting content of his words as he took huge bites from a burger.

Allen suffers from Duchennes, the most common form of muscular dystrophy, in which fat and fibrous tissue infiltrate muscle tissue, causing eventual weakening of the respiratory muscles and the deterioration of the heart.

The disease usually causes death before adulthood. Doctors have told Allen's mother that it's accelerating and that they can keep Allen comfortable for a couple of years.

On Monday, Piercy and his parents made the trip from Ewing, Ill., to Cape Girardeau to be a part of the Muscular Dystrophy Association Telethon, which was held all day inside Auffenberg Autopark.

The event raises money to help research muscular dystrophy and to pay for programs to help those diagnosed with muscular dystrophy. The telethon aired locally on KFVS-12 from 7 a.m. to 6 p.m.

Last year, the local MDA Telethon raised $393,609. It surpassed that goal this year, raising $422,529.

The national telethon raised $60.5 million. Last year, it raised $58.3 million.

The Muscular Dystrophy Association is a voluntary health agency, a partnership between scientists and concerned people aimed at conquering neuromuscular diseases that affect more than 1 million Americans.

MDA combats neuromuscular diseases through programs of worldwide research, comprehensive medical and community services, and far-reaching professional and public health education.

In other words, to help people like Allen.

At various points throughout the day, Allen could be seen on camera, answering phones, waving maniacally at the cameras and at one point eating birthday cake, laughing and having fun.

Being a normal 9-year-old.

The association has been a huge lift in Allen's life, said his mother, Sheila Bonsack.

Braces, wheelchair, camps

When Allen could walk, MDA paid for the leg braces to help his fragile legs work. It paid for medical clinics and hours of physical therapy after he was diagnosed at 2 years old, unable to crawl. When his legs gave out, it paid the $2,000 for a manual wheelchair to keep him mobile.

It also paid for summer camps, so Allen could be around other kids like him, those who suffer from muscular dystrophy.

For a few weeks each summer, Allen was just like all the other kids, his mom says. He rode horses. He swam. He was able to taste the normal life of a 9-year-old.

"MDA has been so very important for us," Bonsack said. "We'd do without equipment. His quality of life wouldn't be anywhere near what it is today."

That's why the telethon is so important to MDA, said Rene Goodman, coordinator of the telethon and the director of MDA's local district, which includes 35 counties in Southeast Missouri, Southern Illinois and western Kentucky.

"It's kind of a time to honor folks in the heartland who raised money for MDA," she said. "We take small and large pledges. Our goal is always to raise $1 more than we did last year."

Money came in from people like a group of elementary schoolchildren from Van Buren, who held a "hop-a-thon" and raised $2,500. The folks at D-Mart kicked in $1,189. The Student Alumni Association at Southeast Missouri State University raised $6,500.

People like that showed up all day.

"It's really something," Goodman said. "This is our big time of the year."

'She's so determined'

No one would get an argument about that from Victoria Lowes, a 12-year-old who lives in Cape Girardeau and suffers from congenital myopathy, an unspecified muscular dystrophy that causes muscle weakness.

Lowes is fighting for the use of her legs, said her mother, Edie Lowes.

"She's so determined to never have to be in a wheelchair," Edie said. "She's bound and determined that's not going to happen."

Diagnosed at birth, Victoria tires easily and it would take her an hour to walk the length of the Cape Girardeau Central Junior High School. Now, she's recently acquired a dog named Sami, who is going to be trained to help keep her on her feet.

Sami is not part of an MDA program, but several other programs have been useful to Victoria. Like Allen, she attends medical clinics and the camps, and the MDA has helped her mother figure out insurance paperwork.

"With MDA, these kids are doing things they'd never get to do," said Edie Lowes. "It's a wonderful program. I wouldn't want to think about what life would be like without it. They offer so much."

In Victoria's case, it offers her the possibility of a future on her feet.

"I want to be an EMT," she said Monday. "I like to help people."

smoyers@semissourian.com

335-6611, extension 137