Race Helps Family Fight and Shed Light

SEASIDE PARK — Dana Edwards wants to see more than 1,000 runners lace up their shoes and take off from the starting line, all in honor of her youngest son.

Saturday is the third annual Tanner’s Run, a 5K race and 1-mile fun run in Seaside Park. Just four years ago, Tanner Edwards, now 8, was diagnosed with Duchenne muscular dystrophy, a muscle-wasting disease that primarily affects boys and has no cure, his mother Dana Edwards said.

The Toms River family started the race, for runners and walkers, to help cover the steep costs of medical expenses and clinical trials while also raising awareness about the little-known fatal illness that set his life expectancy at 20 years old.

“It’s a horrible disease for any little boy,” Edwards said. “We’re trying to put 100 years into 20.”

The race helps free up some funds for the family, Edwards said. Costs of caring for a son with Duchenne, plus five other children, can add up quickly, from doctor visits to home improvements aimed to ease his movements, she said.

“I just want to give him the best life I can give him,” Edwards said.

Proceeds raised from the race last year helped the family travel to Texas for a clinical trial, Edwards said. The family also donates funds to Parent Project Muscular Dystrophy, a national nonprofit fighting for a cure for Duchenne.

According to the organization, Duchenne is the most common fatal genetic disorder diagnosed in early childhood, affecting one in every 3,500 boys and 20,000 babies born each year worldwide.

The group estimates about 15,000 men alive now have Duchenne.