JAY — Two families are working together to raise money for a cure and improve their children’s lives and others diagnosed with a disease that attacks part of the brain.

Chris and Lisa Brochu of Jay and Brittany Parker of Lewiston are teaming up to hold the second annual Hope With Every Step 5K race/walk in Maine, beginning at 9:30 a.m. Oct. 1 at the Livermore Falls Recreation Field.

The day includes a 2-mile family fun walk, live entertainment, crafts, games and more from 10 a.m. to 3 p.m. Rain date is Sunday, Oct. 2.

The two Brochu children, Josh, 9, and Brooke, 6, were diagnosed two and a half years ago with ataxia telangiectasia, a neuro-degenerative disease that attacks the part of the brain that controls motor skills.

They both attend Jay Elementary School.

Josh’s symptoms last fall included weakened muscles, an unsteady gait and the beginning of slurred speech. Brooke’s included immune deficiencies and the tendency to catch more colds.

“As expected, there has been a noticeable change in them both over the last year due to the degeneration caused by A-T,” Lisa Brochu said Monday. The family has since moved into a one-story house to make it easier for their children.

Brittany Parker said her 5-year-old daughter, Emersyn “Emmy” Rowles, diagnosed with A-T at 2, is a kindergarten student at McMahon Elementary School in Lewiston. Her son, Grady Rowles, 2, does not have A-T, she said.

Parker said Emersyn wears adaptive devices on her legs to help with her walking and takes a daily antibiotic regimen to boost her immune system to minimize reoccurring infections.

In 2010, the families, with help from friends and community members, raised more than $60,000 for the A-T Children’s Project. They held the first Hope With Every Step event in Maine. They were recognized with the first A-T CureTeam Perpetual Trophy for raising the most money for the cause.

The Ataxia Telangiectasia Children’s Project was founded in late 1993 by a family in Florida with two young sons who have A-T. It is a public, tax-exempt, nonprofit organization and all gifts and donations are tax deductible. Funds raised are used to accelerate international scientific research aimed at finding a cure and improving the lives of all children with ataxia telangiectasia, according to the organization’s website.

The money raised goes to find life-improving therapies and a cure.

Brochu’s day care provider, Jeanne Jackson and her daycare families hosted a second annual lawn sale recently that raised $2,500 for the Project, Lisa Brochu said.

“Our hopes are to raise as much money as possible for the A-T Children’s Project and bring awareness to this disease,” Brittany Parker said. “We need the help of the community.”

dperry@sunjournal.com

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