Moonball at Waterfront Park helps support Dobbs Ferry boy with rare disease
A community in Dobbs Ferry didn’t let the weather dampen their spirits as they showed support for Jacob Moon and his family.
Moon suffers from Sanfilippo syndrome, a rare disease that causes fatal brain damage in children. He was diagnosed at 3-years-old.
Moon’s father, William, told News 12 that one of the hardest things to deal with is knowing his son reached his intellectual peak at age 3.
“He lost speech at around 6 years old and then eventually he’ll be in a wheelchair, and then a feeding tube,” explained Moon. “The worst is yet to come.”
The steady progression of the disease has increased the financial burden on the family.
In an effort to help the family, the community raised money, and spread awareness of the syndrome with a kickball tournament they call MoonBall at Waterfront Park.
The have raised $30,000 and have used the funds to buy a swing set with an adaptive swing for kids with disabilities.
Organizer Brooke Bass says the swing set will allow Jacob to be part part of the action with other kids.
“Now he can to the park with his friends and he can be in his swing,” says Bass. “Not just watching everyone else play.”
The rest of the money raised will go toward research to find a cure for Sanfilippo syndrome.
Jacob’s sister, Ella, says it’s nice to see everyone come out to support her brother and family.
“It’s been really hard with everything, but just knowing that this many people are here and support us, its just so nice,” says Ella.
Patty Hartnett, another organizer of the tournament, says Moonball is helping to spread awareness for a family that has been handling this with “tremendous grace.”
“If there’s more understanding for Jacob’s need, there will be more support,” says Hartnett.
Moon tells News 12 it is reassuring to know if Jacob “did have a need and financially we couldn’t swing it, that Moonball would come and step in.”