Parents run with purpose

Robert Blechl

HILLSIDE DISTRICT -- Each time their running shoes strike the asphalt

along the withering 26.2-mile course, Jim and Rosie Roope will have only

one thought in their minds: the health of their 2 1/2-year-old son,

Tyler.

Tyler was diagnosed in November 1998 with Spinal Muscular Atrophy, a

group of inherited, and sometimes fatal, diseases that destroy the nerves

that control walking, crawling, head movements and other voluntary

actions. On Sunday, the Burbank parents will use the 15th LA Marathon as

a vehicle to raise awareness of the disease and help fund research.

Despite his inexperience, Jim said he wasn’t too worried about

finishing the race.

“A lot of people say to me, ‘it’s too bad you’re going through this.’

But I’m not the one going through this. I can walk, I can run,” he said.

“At the very least I can run 26 miles to find a cure for Tyler. I’ll have

no problem doing that.”

Rosie is the president of Families of SMA, Southern California

Chapter, which includes about 200 families of afflicted children. Jim is

the chapter’s treasurer, and funding and volunteer coordinator.

Volunteers in the nonprofit group hope to raise $20,000 for research

through Sunday’s marathon -- which begins and ends in downtown Los

Angeles -- Rosie said.

“We all decided to do something special for our kids and this is one

way we can all do it together,” she said.

Spinal Muscular Atrophy is the No. 1 genetic killer of children under

2 and has no known treatment or cure, according to Families of SMA. It

affects one child in every 6,000 births and one in 40 people is a carrier

of the gene, which crosses all age and ethnic boundaries. It affects

approximately 50,000 people in United States, according to the group.

Despite its frequency, Rosie said some physicians are still unable to

determine symptoms in children.

“My husband and I were the ones to diagnose Tyler,” Rosie said. “We

knew he had some serious problems, but the doctors told us he would

outgrow them.”

There are three types of the disease, with Type 1 being the most severe. Roope said her son is afflicted with Type 2, which keeps him from

walking or crawling and causes tremors in his fingers. The disease also

makes Tyler susceptible to respiratory illnesses, she said.

But Rosie remains confident.

“The current research is very exciting. The national chapter of SMA

has taken on a $4-million commitment to fund research,” she said. “We

hope to find a cure soon.”

The couple, who have two other children, Ryan, 9, and Megan, 7, have

spent eight months preparing for the marathon. Neither are avid runners,

though Rosie trained for and ran in the 1996 L.A. Marathon. In their

professional lives, Rosie is the director of the Southern California

Cable and Telecommunications Assn. and Jim is a reporter for KNX radio.

HOW TO HELP:

To contribute to Families of SMA, or for more information about Spinal

Muscular Atrophy, call (888) 762-2267 IF YOU GO

WHAT: The 15th annual L.A. Marathon

WHERE: The run begins just north of Sixth and Figueroa streets in

downtown Los Angeles. It finishes a block away just south of Fifth and

Flower streets in front of the Los Angeles Public Library.

WHEN: 8:45 a.m. Sunday for runners and walkers (wheelchair starts

begin at 8:20 a.m.)

PARKING: Several lots in the downtown area will be available

INFO: A registration fee of $65 was required for all participants. For

more information, call (310) 444-5544 or visit the marathon Web site at

https://www.lamarathon.com.