This Sunday, the Martin and McMillan families of Warwick will partner once again with Iggy’s Doughboys and Chowder House for the second annual Iggy’s Doughboy Dash to raise money for The A-T Children’s Project (ATCP), a non-profit aimed at researching and providing support for kids living with Ataxia-Telangiectasia (A-T). The Martins and McMillans both have children living with A-T, 8-year-old Zach McMillan and 14-year-old Andrew Martin.
This year’s Dash will be held Sunday, April 13 (rain or shine), with check-in at 11 a.m. and the Dash starting at noon. This year’s event will be held at the new Iggy’s Boardwalk at 889 Oakland Beach Ave.
The Dash requires participants to walk or run a mile-long course around Oakland Beach, stop at Iggy’s to eat a dozen, miniature doughboys, and then repeat the mile loop.
Organizers suggest participants arrive early to check in, receive their t-shirt and turn in donations. The cost is $25 per person, $50 for a family of three and $75 for a family of four. Registration can be done online at www.atcp.org/DoughboyDash.
Last year’s inaugural event had nearly 400 participants and raised $33,512 for ATCP.
The goal of ATCP is to research and support families facing this disease, which affects 1 in 40,000 children. A-T is a degenerative disease affecting many systems within the body, leading to progressive loss of muscle control, immune system problems and a higher rate of cancer; there is no cure or treatment. Most children are confined to a wheelchair by age 10, and pass away from either cancer or respiratory failure by their early 20s.
“Because of the fundraising efforts, we were able to establish and fund a clinical center at Johns Hopkins in Maryland,” said Jennifer Thornton, executive director of ATCP. “In that time, they’ve really been able to do a lot to help children living with A-T.”
Thornton explained that a child may visit the clinic every few years for check-ins and support, but the clinicians are available to consult with local doctors any time. Both Andrew and Zach have visited the clinic to receive help. Deb McMillan, Zach’s mom, said he visited the clinic shortly after he was diagnosed with A-T at three years old.
“It was the wobbliness. He never got over the wobbliness,” said Deb. “I thought, ‘Something’s off.’ I never dreamed it was that serious.”
Assuming it was an ear issue, the McMillans brought Zach to the doctors. He was continuously misdiagnosed until a blood test for A-T was conducted at Boston Children’s Hospital.
Zach visited the clinic shortly after diagnoses, and Deb said he would probably visit for a second time in the next year or two.
“They say you should visit every four years or so. They’ve seen more than anybody. It’s good to touch base with them,” said Deb. “We haven’t really had to need it, but they [clinicians] have made it known if you have any issues, you can contact them.”
Over the past year, Deb has noticed her son’s condition progressing. At eight years old, Zach is very unsteady on his feet, and is starting to have difficulty reading and writing.
“Even though he can still walk, he is unsteady and can fall a lot,” said Deb.
Although he is not in a wheelchair yet, Zach does have a medical stroller to use often. Deb said she can’t run errands with her son because he can’t walk for long.
“He would start to say his legs hurt or he’s tired,” said Deb. “I can’t go alone with him because I have to push the stroller and the carriage.”
Zach has a full-time aide with him at school, and most of his work is done on a laptop.
“He can still write, but it’s difficult for him,” said Deb.
She has noticed Zach is also losing his ability to control eye movements, making it difficult to read.
“It would be like us trying to read a book that is moving,” said Deb. “It does strain him; he is starting to feel that.”
Zach does visit doctors regularly and has participated in physical therapy.
“It’s all about stretching those muscles and keeping everything fluid,” said Deb.
She added that her son has yet to experience any major illnesses, but it can take him longer to get over a cold than other children.
Although she has not contacted the clinic often with questions, knowing the resources and experts are available when she does need help has provided some peace of mind.
“Within five to 10 minutes they are calling you back. They really care for these kids,” said Deb.
Another benefit of the clinic, and ATCP in general, is it allows families to find one another.
“We can help families connect with each other. We can give them information about research, help with resources,” said Thornton.
That is how the McMillans connected with the Martin family; Deb said it was unbelievable there was another family in Warwick whose child had the same condition, but she is thankful for the relationship they have. She is especially grateful to have Cathy, Andrew’s mother, to turn to.
“She’s been wonderful,” said Deb.
Although every child’s case is different, Deb has found Cathy to be a great resource since Andrew is older than Zach.
“I can even just text her if I have a question…It’s really helpful to have that connect,” said Deb, saying it provides a glimpse at where she might be one day.
Andrew was diagnosed with A-T at four years old. He goes to school and enjoys sports and other activities like every other 14-year-old, however, he is confined to a wheelchair due to extreme fatigue and body tremors.
“Andrew is a great kid,” added Deb.
In addition to the clinical center, ATCP also works to fund research and scientific workshops aimed at finding life-improving therapies, and ultimately a cure, for A-T.
This weekend’s dash will hopefully result in even more funds for the Project, however Thornton and McMillan say just spreading the word about A-T in the community makes the event a success.
“It’s a great event to bring the community together to help find a cure. I think the community has been so supportive of this effort,” said Thornton.
Deb said her son is really looking forward to the event. Last year, Zach proudly crossed the finish line after completing one of the mile laps, even if he had to go a little slower. Deb is unsure if he will be able to complete the lap this year, but Zach is determined.
“He thinks it’s amazing. He said he wants to train this weekend. It’s a big deal,” said Deb.
Deb is not only amazed at the money raised during last year’s event, but she is happy about the community support it brought out.
“What we did was just amazing, not just financially. You really see how people come through for you,” she said. “[A-T] is not known. It’s tough.”
For more information visit www.atcp.org.