Teen speaks about her disease

SPRINGFIELD - When Laura Beth Jacquin first started speaking publicly about her struggle with muscular dystrophy, she was so shy she could barely get the words out.

Not these days.

Jacquin, 16, one of the more than 200 people who took part in yesterday's Stride & Ride third annual walk for the Muscular Dystrophy Association in Forest Park, not only talks the talk and walks the walk, but can also raise money - lots of money.

"I'm finally getting to a point where I'm not nervous speaking anymore," said the Longmeadow High School student, who raised more than $16,000 this year for the MDA. Three years ago, she raised $5,000. Last year, wanting to double that amount, she raised $16,000, and this year a little more than that, said her mother, Patti N. Jacquin of Longmeadow.

Pledge totals for the walk were not available yesterday, but organizers said they were hoping to exceed the $22,000 brought in by last year's walk.

Diagnosed at age 11 with Friedreich's Ataxia, a rare recessive neuromuscular disease that strikes one in 50,000 children between the ages of 11 and 15, Jacquin decided not to be a victim but an advocate for a cure.

"I was able to dance and do gymnastics, but some kids are diagnosed at 4 and never get the chance to have the childhood I had, so that's why a cure is so important," Jacquin said of her regular speaking engagements and fund-raising activities.

Margaret A. Wheble, district director for the Western Massachusetts chapter of the MDA, said funds raised from yesterday's walk will go to local groups and organizations such as the pediatric and adult clinic at Baystate Medical Center and the MDA summer camp, Camp Florian, in Canton.

Wheble said the most common form of the disease in children is Duchenne Muscular Dystrophy, a progressive neuromuscular disease that affects mostly boys.

There are more than 43 neuromuscular diseases, including Lou Gehrig's disease, which the MDA seeks funds to help cure and treat, she said.

Though there are no cures for these neuromuscular diseases, families like the Jacquins do what they can to help find one.

After her parents' trip to Paris to meet with doctors doing research, Jacquin is now taking the drug Idebenone, an antioxidant used to help prevent cardiomyopathy, a malfunctioning of the heart muscle that often leads to death.

Munroe, an assistant dog, helps Jacquin with turning out lights, fetching her shoes and pulling her wheelchair up a ramp.

Trained by the National Education Assistance Dog Services, Munroe's $6,000 cost was paid for by Pet Co. Inc. of New England, Patti Jacquin said.