Striking at a killing disease

Aid: Touched by the face of a little girl whose genetic disease was sapping the strength from her muscles, Thomas Becker launched his own version of bowling for dollars.

July 31, 2000|By Rasmi Simhan | Rasmi Simhan,SUN STAFF

On the TV news in February 1999, Thomas Becker recalls, was the prettiest child he'd ever seen, and she was dying.

Allie Brennan, then 8 months old, suffered from spinal muscular atrophy, a genetic disease that would weaken her muscles until she could not stand, swallow or breathe.

Her father had managed to raise $8,000 toward her medical costs by raffling off Super Bowl tickets. But Becker knew that wasn't enough - and that he could help in a unique way.

So Becker, a professional marathon bowler from Denver, bowled to raise money, breaking a Guinness Book of World Records mark in the process by bowling for 30 hours and 48 minutes.

"I had the idea that if I could raise more money, she would be OK," said Becker, 35.

When Allie Brennan died a month later, Becker vowed not to stop bowling until a cure for the disease was found.

This summer, he's crossing the country, bowling hundreds of strikes at $10 a ball to help raise $1 million for spinal muscular atrophy research.

With backing from a number of bowling organizations, including manufacturer AMF Bowling Inc., he started May 10 in Denver.

Now, a couple of dozen blisters later, he's supposed to have reached Wheeling, W. Va., today. His AMF/FightSMA.com Tour is scheduled to arrive at AMF Laurel Lanes in Laurel Wednesday.

Spinal muscular atrophy, or SMA, is the No. 1 inherited killer of children under age 2 and affects more than 20,000 people of all ages annually. Despite its frequency and severity, SMA sparked little research before the late 1980s.

SMA is a neuromuscular disease that results from the dysfunction of one of two genes that produce motor neurons. Muscles surrounding the spinal cord become too weak to allow those affected to stand, walk or lift heavy objects. Patients often need support to breathe and eat. Depending on the type and severity of the case, SMA patients are expected to live from a few months to about 30 years.

Allie Brennan suffered from Type I SMA, the type that surfaces even before babies are born. Their breathing is labored and they can't swallow. Mothers might notice that the fetuses don't move much within the womb.

Joe and Martha Slay of Richmond, Va., who are working with Becker on the FightSMA.com Tour, knew nothing about SMA when their son Andrew was diagnosed with the disease. He had reached 14 months without walking, and had broken his leg twice when he tried to stand.

Andrew Slay has Type II SMA, which manifests just after a child's first birthday. Type III SMA strikes in adulthood.

While their efforts have since helped researchers pinpoint the gene whose dysfunction causes the disease, there was almost no information about SMA when Andrew Slay was first diagnosed. So the Slays took it upon themselves to do something about it.

Spreading the word

In 1991, the Slays founded Andrew's Buddies to spread awareness of the disease, support SMA families, hold forums for scientists and raise money for research.

Their activism began with one clear goal: to raise $100,000 for a DNA sequencer that could help researchers pinpoint the gene whose dysfunction causes SMA.The group started with letter-writing campaigns. The gene sequencer's manufacturer knocked $15,000 off the price tag when it heard about the effort. Andrews Buddies wheeled it into the lab at Columbia University in New York on Andrew's sixth birthday. By 1995, researchers had identified the defective gene.

Andrew's Buddies went nationwide earlier this year after the group appeared on NBC's "Today" show to discuss funding for the first trial of a drug that it's hoped may fight SMA. Parents of children with SMA began calling the Slays and asking how they could help.

According to the Slays, after talking with about a dozen interested families and holding training sessions, chapters for fighting SMA sprang up across the country, from the West Coast to Illinois, Ohio, Florida, Virginia, New York, and Ontario, Canada. A Web site - www.fightsma.com - has also been established, carrying information about the disease and keeping tabs on the progress of Becker's tour.

Rolling along

The marathon bowler is rolling across the country with two dozen bowling balls, each bearing the name of a child with SMA. Sometimes he bowls the 100 strikes he's gotten pledges for in as little as 40 minutes. He talks with families of SMA victims who show up at the events, and sometimes returns to bowl even more.

"Lifting the pounds is tough," he says, referring to the heavy bowling balls. "Meeting families is really tough."

He keeps photos of many children, including Joshua, a Florida boy with dark hair and dark eyes - "like me when I was a kid" - and Lauren from Ohio, who has "long curly hair and big blue eyes - just the sweetest little girl, and shy, like me."

He used to memorize the names, ages and hometowns of each SMA child he met. Now, with thousands of names to remember, he can't recall them all. But that very fact has made him more dedicated to reaching his goal by the tour's end in New York at the end of August.

"If I don't make a million [dollars by New York City, I'm staying on that lane until they raise a million," says Becker. "I won't get off it."

More information about spinal muscular atrophy and the AMF/FightSMA.com Tour can be found online at www.fightsma.com, or by calling 1-877-9AMFSMA. Contributions to SMA research can be sent to FightSMA, P.O. Box 785, Richmond, Va. 23218-0785.

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