Mom runs race for son’s future

SYLVIE BELMOND/Acorn Newspapers ON A MISSION—Beth Kilgore and Eileen Burke will participate in the Run For Our Sons Half Marathon at Disneyland next month. Donations raised by Team Andrew will benefit the Parent Project Muscular Dystrophy organization. Kilgore's son, Andrew, 13, (inset) with best friend Brennan, Burke’s son, is affected by Duchenne muscular dystrophy, a degenerative muscle disorder. Moorpark resident Beth Kilgore doesn’t need a doctor to tell her just what’s at stake in her son’s battle with a severe form of muscular dystrophy called Duchenne.

She lost her brother, John Allman, due to complications from the degenerative disease when he was just 19.

So as part of her ongoing fight for the future of 13yearold Andrew, Kilgore and friend Eileen Burke will participate in the 13.1 mile Run For Our Sons Half Marathon at Disneyland next month.

Donations raised by Team Andrew will help the Parent Project Muscular Dystrophy organization, which works to improve the treatment and longterm outlook for individuals who have Duchenne.

Duchenne muscular dystrophy causes muscles to break down and results in progressive loss of strength. It is caused by a gene mutation.

The disease affects one in 3,500 boys and it’s the most common incurable genetic disorder diagnosed in childhood.

“Duchenne hasn’t gotten enough attention from the media, even though it’s the number one lethal genetic disorder in children,” Kilgore said.

Since few treatments are available, most people who have Duchenne die before they reach early adulthood, and only a few live into their 30s. Yet giving up hope is not an option for Kilgore, who endeavors to help her son beat the odds.

“The fundraiser gives me hope that there might be something that could come along and help,” Kilgore said.

Burke said she’s joining in the fundraising effort because she’s inspired by the Kilgore family’s ability to make the best out of a difficult situation, ensuring that Andrew enjoys a normal childhood and continuously seeking solutions to increase his prospects for a healthy future.

Burke’s son, Brennan, 12, and Andrew have been friends for about eight years.

Like typical boys their age, they play video games, watch YouTube videos and go to the movies, but they can’t play basketball, soccer or roller hockey together because Andrew’s muscles have grown weaker in recent years.

Andrew has had mild symptoms since infancy, but his overall mobility wasn’t affected until adolescence. He began to have more difficulty with everyday activities, like standing and walking without support, about three years ago.

Although Andrew is on steroid therapy to slow the progression of his disorder, his muscles continues to weaken, his mom said.

“He’s gone beyond the prognosis because he’s not wheelchair bound by age 10, but it’s coming,” Kilgore said.

The disability, however, is not abating Andrew’s strong will to be an independent young man and he hasn’t lost his dexterity. He uses a hand controller to defeat opponents on the firstperson shooter game “Call of Duty.”

When the Moorpark Acorn visited the Kilgore family last week, Andrew was engrossed in a video game contest with his two friends, Brennan and Michael Lennox, 11.

“(Andrew)’s good at video games,” Brennan said.

Gifts received from the Make-A-Wish Foundation, such a large flat screen television, a laptop computer, a digital camera and video game console, have helped to keep Andrew and his buddies occupied during the long summer months.

In addition to playing electronic games, the boys like to go skateboarding. Brennan and Michael said they enjoy getting a pull from Andrew, who pulls them up hills using his electric scooter.

“As far as Brennan is concerned, he doesn’t think of Andrew as any different. They’re just friends, they play together, yell at each other, get mad at each other and laugh together,” Eileen Burke said.

Burke, who has never done a half marathon before, said she looks forward to the upcoming race.

“Our goal is to raise $5,000 so Andrew and Brennan can continue to hang out together as long as possible,” she said.

As part of their training, both local women recently participated in shorter fundraising races benefitting a hospice in Moorpark and Meals on Wheels.

“Having someone like Eileen in my life is a godsend. It is a rare person who is not in your shoes but understands and cares as though she were,” Kilgore said.

To date, Team Andrew gathered about $4,000 for the upcoming Run for our Sons event, which takes place Sept. 6.

More donations are sought, Kilgore and Burke said. Contributions can be made at www.parentprojectmd.org/goto/ teamandrew

Andrew and Brennan will attend seventh grade at Chaparral Middle School this fall.

The Kilgore family also includes Steve, Andrew’s dad and his sister, Katie, 14.