Group travels with RAGBRAI for 9 year-old with deadly disease - KWWL - Eastern Iowa Breaking News, Weather, Closings

Group travels with RAGBRAI for 9 year-old with deadly disease

Posted: Updated:
WAVERLY (KWWL) -

Bicyclists all have a reason for participating in RAGBRAI.

For the Griffin family of Birmingham, Ala., RAGBRAI has been a great opportunity to spread awareness about Duchenne disease and their 9 year-old boy, Gabe.

Gabe was born with the disease and family members expect him to die by the time he's 20.

The Griffin family heads up the organization, Ride4Gabe.

They're serving as a support team for two bicyclists -- Wes Bates, a college student from Aurora, Colo., and Michael Staley of Washington, D.C., who have committed to cycling a 3,300-mile journey across the country to help raise awareness of the disease.

The group changed its route to include RAGBRAI.

"It's been an incredible experience," said Scott Griffin.

Together, the group's mission is to spread awareness about Duchenne, a form of muscular dystrophy, and also raise money for research.

Griffin said his family is advocating for the Federal Drug Administration (FDA) to approve a drug that's been in clinical trials for three years.

He said the drug would likely save his son's life, and he doesn't understand why the FDA won't expedite approval.

"Just like these cyclists in this race, I gotta dig down deep and find the energy," he said.

"I can't give up the fight. I can't stop...he's my son," he said.

The group plans to make it back home to the Griffin's home in Alabama sometime in mid-August.

To follow their journey, click here.

Powered by Frankly