Community comes together for family with special needs

September 13, 2012 9-year-old Jake Saxton has become a whiz playing hockey on his power wheelchair.

"Well it took a lot of practice, I practice mostly every day or another day," he said.

But getting around without his chair or braces is difficult.

His parents say as babies Jake and his twin sister Rachel met all their milestones, but around two years old, Jake seemed to struggle.

"It was like it would require him a lot more energy to get off the floor. Rachel would start going up the steps and Jake would just watch her go up and down," said Paula Saxton.

Then they received the diagnosis: Spinal Muscular Atrophy or SMA. It is an inherited disease that causes muscle weakness that gets worse with time.

Still the Saxtons feel blessed. Jake is mentally very sharp, happy and has tons of friends.

They weren't expecting another blessing, but then came little Kate.

There was a 25% chance she would also have SMA. The Saxtons recently learned she does, and will face a similar fate as Jake.

"There are no words to describe it," said Gary Saxton. "You have to sit in a parent's shoes to really understand what this disease is all about and what it could do."

Knowing the struggles the family will face, neighbors from New Hope and Solebury Township came together to help.

"Everyone in the community, we get endless emails, 'How can we help?' services, donations, volunteering," said Adrienne Deussing.

"This story just hit home," said Rich Zaveta.

One of those neighbors is builder, Rich Zaveta of Zaveta Custom Homes.

He is donating design, time and much of the work to make the Saxton's older home, newer with more space to give the kids as much independence as possible.

Jake won't have to be carried upstairs; he will have an elevator and a new bathroom.

"They can turn and rotate without being encumbered by space," said Zaveta.

"I think it's going to be good," said Jake. "I can have more ability in the house."

Jake's parents say once again, they feel blessed.

"Sometimes the best medicine is friendship and we have found that here," said Paula.

The neighbors are holding a fundraiser on Saturday to help raise money for supplies and other things that are still needed for the re-construction.

For more on Jakes's story, For more information on Spinal Muscular Atrophy, visit
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