Manlius: Family struggles with fate of twins

"She knew," Alison said. "They both knew exactly what it was when they saw [the symptoms] but it wasn't within their jurisdiction to say. It wasn't their place."

Team raises more than $1,000

Fayetteville Elementary first grade teacher Courtney Mosher -- who had Caleb as a student just this past year -- wanted to help the family raise money for the cause.

"She put together a team of faculty members at Fay El unbeknownst to us," Alison said. "She did it all completely behind the scenes."

Mosher said she had wanted to do some meaningful volunteer work for some time. When the twins were diagnosed with Duchenne, it was an opportunity for her to do something for people she knew -- it put a name with the cause.

She initiated a meeting and helped organize a team comprised of faculty members to participate in the third annual MDA of Syracuse Stride and Ride held in June -- an event that raises money for MDA research.

"They're such a great family," Mosher said of the Willis'. "It was a school-wide effort."

Both Matt and Alison were overwhelmed with gratitude.

"There's a large circle of hope for these boys," Matt said. "Between my parents and her parents and then the kind of giving that Courtney Mosher and the rest of the teachers at Fay El I wouldn't expect that. I would never expect that, and that's just completely heartwarming."

Finding a cure

Parent Project MD Organization is a central mouthpiece for Duchenne Muscular Dystrophy, and is at the forefront of Duchenne research and funding.

Matt Willis firmly believes a cure will be found.

"I look at my two sons and I can't think of it any other way," he said. "We'll just take it day by day and I have a profound hope that a cure will come along."

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