As luck would have it, the mother of a friend of Matt and Alison Willis is a realtor. When the Willis family learned their 5-year-old twin boys had Duchenne Muscular Dystrophy, their contact seemed Heaven sent. She called the Willis' shortly after the diagnoses were made, because a home on the market had the exact accommodations that the family was going to require.
"We didn't move because we needed more space," Alison, a native of Cazenovia, said. "We moved because this particular house is handicapped accessible."
The Willis' former home in the village of Fayetteville was built into the side of a hill with steps leading up to both entrance doors. Their new home in the village of Manlius is located on a flat street, which will make it easier for the boys, Jack and Nolan, to get around as their disease progresses. Matt, who grew up in Liverpool, said that in most cases, patients are wheel chair bound by age 10.
According to the Muscular Dystrophy Association, muscular dystrophies are genetic disorders characterized by progressive muscle wasting and weakness that begin with microscopic changes in the muscle. As muscles degenerate over time, the person's muscle strength declines.
Duchenne is the most common and severe form of pediatric muscular dystrophy, and is predominantly found in boys.
Jack and Nolan, who were diagnosed with the disease back in November, understand they now suffer from this disorder, but their older brother Caleb, 7, understands more clearly.
"[Caleb] probably understands a little bit more than they do," Alison said. "He understands that wheelchairs are most definitely in their future. They don't."
Fayetteville Elementary physical education teacher Laurie Valentine first suspected the boys might have MD when she recognized some distinct symptoms in class. She called in the school's physical therapist Jeannine Quirk who observed them for three weeks prior to contacting their parents. Quirk then suggested to Alison that the boys see a neurologist.