One Williamsport Dad is Paddling for a Cure

Steven Moff almost forgot date night with his wife Theresa on Tuesday.

But to be fair, he had a pretty stressful day: he had to help his son Hunter, age 20, get to school (two baths and breakfast before 7am), train for a stand-up paddle boat race in California, and see his daughter Sydney, age 25, through the medical protocol for an episode of intense pain.

However Steven described this as a normal day for his family: two of the Moff’s three children have Sanfiippo Syndrome, a rare disease that causes deterioration of the brain and the body.

Changes in Children

Sanfilippo Syndrome is caused by a missing enzyme that breaks down body sugar. The sugar eventually backs up in the brain and slows development. The disease leads to immobility, unresponsiveness, and seizures. Children with Sanfiippo syndrome rarely live past the age of 15.

Around 200 American children are born with Sanfilippo Syndrome each year, including Sydney and Hunter Moff. Their middle brother, Stefan, was not hit with the disease.

Sydney was diagnosed with a hearing disorder at 3 years old, and led a very normal life until she was around 7 years old. “You wouldn’t have known she had this disorder,” her father said.

But Sydney is now bedridden. She lives at home with her family, and receives 24/7 care from a visiting nurse.

“Hunter can walk a little,” said Steven. “But he can’t speak.”

Their brother Stefan, age 21, is a devoted friend to his siblingns. He’s travelling with his parents to California to cheer Steven on in the Battle of the Paddle. 

Paddle for the Cure

Steven Moff and his family are working tirelessly to find a cure for Sanfillippo Syndrome. The stand-up paddle boat race in California -- the Battle of the Paddle -- is Moff’s most recent fund-raiser. He’ll race over ocean waves and through the surf tomorrow in the largest stand-up paddle race in the world.

A three-time marathoner, Moff has used races as fund-raisers in the past. He raised $23,000 for Sanfilippo research through the 2004 Marine Corps Marathon.

While Steven’s legs are no longer able to take marathons, he decided to try paddle boating after seeing it done on a family vacation to South Carolina.

“It’s great exercise, really good for your core. It’s very relaxing. I have a stressful life,” Steven said.

Moff taught himself to paddle via youtube videos, and trained in the west branch of the Susquehanna River. He’s hoping his participation in this unique sport will raise more awareness for his fund-raising efforts -- although these efforts may not benefit his own family.

Hope for the Future

While a few research initiatives may be coming closer to a cure, Sydney and Hunter could not benefit from it at this point in their lives.

“Anything I do is not for my kids,” Moff says. “Now we’re just trying to help kids in the future.”

The money Moff raises from his marathons, paddle races, and other fund raising events, will go to the Children’s Medical Research Foundation, based in Chicago.

Members of their hometown community have been very generous to the Moffs’ cause. “They’ve never said no yet,” Moff said.

Moff hopes that through social media he can draw more attention from communities beyond their own.