Danvers mom trains for marathon to help 4-year-old son

By Chris Cassidy
Staff writer

DANVERS — Danvers resident Kristin Murray will tackle next month's Boston Marathon for the first time, for her 4-year-old son, Jack.

Murray is hoping her double-digit training runs in frigid temperatures will translate to glory at the Copley Square finish line and a renewed awareness for what doctors often call "the invisible disease."

Jack has mitochondrial disease, a little-understood but potentially fatal genetic disorder.

He takes a half-dozen medications. Ten specialists track his progress. And after a trip to the emergency room last summer, doctors inserted a feeding tube, which prevents him from eating solid food.

"His whole life revolves around pharmacy trips and doctor's visits," Murray said.

The disease prevents cells from producing enough energy to power major organs inside the body. It can also lead to other complications, including muscle weakness, seizures, heart and kidney disease, diabetes and problems with vision and hearing.

"He looks like a healthy child on the outside, but on days where he has no energy and his legs hurt, he can end up in the hospital," she said. "If he gets a simple cold, it can spiral because he can't fight off infection or tolerate heat. That's why we're trying to boost awareness. Even if you go to a local emergency room, they don't know what it is."

And even though it afflicts one out of every 4,000 Americans — the same rate as cystic fibrosis in Caucasian infants — few people have ever heard of it. It's often misdiagnosed because so few doctors specialize in the disease.

"If I can get the word out about this disease, there's a chance Jack can live a longer, healthier, fuller life," Murray said. "I feel like that's my purpose."

So far, the response from the community has been encouraging.

The Starbucks in North Beverly has agreed to close the store for four hours next month so Murray can host a fundraising night there.

Even Jack's school has gotten involved.

As part of its annual community service project, the Riverside Elementary School will spend half the year raising money and awareness for mitochondrial disease, Principal Garth McKinney said.

The school has already begun selling blue bracelets and has set up collection buckets in the classrooms. Proceeds from next month's student-faculty basketball game will benefit the educational Mitochondrial Disease Action Committee.

Since January, the school has raised $1,000 — and more is expected.

'PATHETIC' BUT DETERMINED

The other challenge in Murray's marathon bid has been the actual running, which she admits doesn't come naturally.

Last year, she ran her first half-marathon, a slushy stomp through the streets of Boston, in 2 hours, 30 minutes — a time she called "very pathetic."

"It was terrible," she said. "I stunk at running, and I didn't train right. I had shin splints. I had no idea what I was doing."

Sunday, she ran the same race and shaved 24 minutes off last year's time. But the swifter pace may have come at a high price — she tore the nail in her big toe. She's hoping for a quick recovery.

Murray's "unofficial trainer" is her best friend, Shannon Doherty Alger of Essex, whom she met nearly 20 years ago during her freshman year on the University of New Hampshire swim team.

Together, they've taken on training runs as far as 16 miles.

"Every weekend, it's like a therapy session," Murray said.

After the run, they hit the coffee shop for a recharge of sugar and caffeine.

"She pays me in coffee, doughnuts and muffins," Alger said. "But I'm not sure a professional trainer would have you do that."

"To have your child have a progressive disease is pretty devastating," Alger said. "For her to pull herself up by the bootstraps and hang in there, I think it's great."

So what is Murray looking forward to the most after scaling Heartbreak Hill next month?

"Cheeseburgers and beer at the finish line," she said.

THE INVISIBLE DISEASE

What are mitochondria?

They are specialized compartments in cells and considered the powerhouse of the cell. Mitochondria produce the energy needed for organs to function.

What is mitochondrial disease?

It's a potentially life-threatening genetic disorder, caused when mitochondria fail to produce enough energy to power major organs.

What are the symptoms?

The disease can cause muscle weakness, seizures, heart or kidney disease, diabetes and problems with sight or hearing. On a bad day, patients feel run down and seriously ill. The prognosis varies from person to person — some are only minimally affected, while others battle serious health problems their entire lives.

Source: www.mitoaction.org