JAY — With every step they took, attendees at Saturday’s Hope With Every Step event at Spruce Mountain High School raised money for research for ataxia telangiectasia, a rare children’s disease.
The occasional rain showers didn’t faze participants a bit as they took part in a 5K race and walk, children’s games, live auctions and raffles, said Lisa Brochu of Jay, whose children Josh, 14, and Brooke, 11, have A-T.
The 7th annual event had some new twists this year, she said.
“We’ve added a bunch of games this year that we haven’t had before, trying to draw more of an all-ages crowd.”
The event was held to raise money for A-T research and therapies, with the hope of finding a cure. A secondary purpose is to raise awareness of the disease, Brochu said.
Less than 500 children in the U.S. have A-T. Josh and Brooke Brochu and Emmy Rowles, 10, of Lewiston, are the only three children in Maine with the disease.
Brochu said her two children were diagnosed between ages 5 and 7 after both had been born seemingly healthy. A-T takes a toll on the muscles and immune system, and those who are afflicted are more susceptible to cancer and other diseases.
Despite needing to use wheelchairs, Josh and Brooke have continued to attend school and take part in a number of different activities, Brochu said. Josh likes riding his side-by-side ATV with family, playing video games, kayaking and doing adaptive skiing at Sugarloaf, while Brooke enjoys swimming in a pool at the family’s home that was provided by Make-A-Wish this summer.
Emmy’s mother, Brittany Parker, said that her daughter was diagnosed with A-T a week after her third birthday.
“It was super devastating,” she said. “Emmy, though, is very determined. She makes the best of every situation.”
Parker said she met the Brochu family seven years ago, after hearing about Hope With Every Step. Since then, the two families have been involved with the A-T Children’s Project.
The project’s goal is to raise $50,000 annually to fund a research grant.
“The community involvement is unreal,” Parker said. “Every year, it grows a little bit bigger.”
On Facebook, there is a group of parents with children suffering from A-T called “A-T Parents Rock” and Parker said it has helped connect her with parents of children with A-T all over the country.
“It just allows us to communicate different things in our life that are going on,” she said.
Emmy attends Thomas J. McMahon Elementary School in Lewiston. Parker said her daughter does therapeutic horseback riding, has a specially designed bike she rides at home for exercise and loves swimming.
“We try to keep her as active as we can,” Brochu said.
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