This is the first year Andrew Martin won’t be at the Doughboy Dash. Andrew died August 8, 2018 of Ataxia-telangiectasia. He was 19.

“This is a very big one in our minds,” said Andrew’s mother, Cathy, of the dash started by Iggy’s Doughboys seven years ago.

“Seeing what Andrew went through, seeing what he experienced, it’s so important to keep raising money [to carry on research],” she said.

The Doughboy Dash, where runners and walkers stop and munch or “gulp down” – if they’re really out to win – an Iggy’s doughboy will be held Sunday morning with check-in at 8 and the 5K dash starting at 9:30 from Iggy’s in Oakland Beach. Andrew participated in the dash, often leading off the runners in his motorized wheelchair.

In recent years he was joined by Zach McMillan, also of Warwick, the only other Rhode Islander known to have A-T. Zach, who is an honor student at Vets Middle School, is now in a wheelchair, but that hasn’t stopped him from being a member of the unified basketball team, said his mother, Deb.

A rare disease with only 410 diagnosed cases in this country, according to the A-T Children’s Project, A-T degenerates the body. Andrew was diagnosed just before he turned four. Those with the disease usually only live to their teens, with some making it to their 30s.

With such a prognosis, it would seem both Andrew and his family would feel defeated.

“It’s very hard to watch it happening, you adapt…find ways to do fun things,” Cathy said.

Andrew carried on like other kids, attending St. Rose of Lima School, where by the time he left he was using a walker. It didn’t stop him from playing kickball, however. By the time he was in Pilgrim High School he was using a wheelchair and then a motorized wheelchair.

That didn’t stop him either. He was a member of the Pilgrim football team and an assistant to the girls’ basketball team. Although in a wheelchair he took up tennis lessons at Tennis Rhode Island, where he often hit a mean forehand.

“These kids are amazing, incredibly beautiful spirits,” Cathy said of the A-T children she’s meet through the A-T Children’s Project. “They’re loving life in the way they can.”

As for Andrew, Cathy said, he didn’t think about his condition.

“He loved life and just had a positive nature about him. He never said, ‘I’ll be gone,’ he just lived life and was pretty healthy up until the last year of his life,” she said.

But it was more than Andrew’s outlook and positive nature that Cathy says made it a good trip.

“Our family never experienced anything but a positive community, amazing people,” she said. She is especially appreciative of the Warwick School Department.

“I think we’re very blessed. He was given an amazing opportunity to live life to the fullest.”

Cathy wants that for other children with A-T.

“It’s a horrible disease we need to raise money to keep fighting. There’s more Andrews going to need help,” she said.

It’s a commitment that resonates with Jennifer Thornton, executive director of the A-T Children’s Project.

“It’s friends and family that make A-T research happen,” she said.

Thornton said events ranging from dress down days and 5Ks to golf tournaments bring in about $2 million annually. There’s only one Doughboy Dash, however. Monies raised not only go toward research, but also to conduct symposiums and events that bring families together and assist families who have a loved one with the disease.

Medical advances have enabled the detection of the disease within a few months of birth and long before symptoms manifest themselves.

Cathy is especially excited that the A-T Children’s Project has been given the go-ahead for its first gene therapy trial involving an 18-month-old girl diagnosed with A-T. She is hopeful the therapy will lead to a slow down and even better a halt in the progression of the disease.

“Wonderful things are happening as we learn more about A-T,” said Cathy. She noted that the research being done is helping understand other childhood diseases.

“It’s so important.”

The A-T Children’s Project got an extra boost from students at St. Rose and St. Kevin Schools last week as they raised funds with dress down days.

Cathy visited St. Rose and talked with students about the importance of their contributions.

“We were lucky to have a community come around Andrew,” she said.

That effort hasn’t stopped. The community is coming together for Zach and to fight this rare disease.