Fundraiser Sunday to help young LI brothers with spinal muscular atrophy

A benefit is being held tomorrow to raise funds for two baby brothers from Suffolk County who both suffer from the same debilitating disease. (8/17/13)

CENTEREACH - A benefit is being held today to raise funds for two baby brothers from Suffolk County who both suffer from the same debilitating disease.

Both 2-year-old Nicholas and 16-month-old Tyler Accardi have been diagnosed with Type 2 spinal muscular atrophy, a disease that affects all of their voluntary muscle movements. They cannot crawl or stand, and their doctors say they will never be able to walk. They require daily therapy, and they will both need powered wheelchairs to get around.

"I love my boys and once they're in your life, you can never imagine it being any other child," says the boys' mother, ToniAnn Accardi. "But I feel I'm grieving for a life I wanted to give them that they're not going to have."

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Accardi says her husband, Nick, is working two jobs to get better health insurance and to pay for costly medical equipment. They also need to make their entire home handicap accessible, but they can't afford it.

That's why the family is holding a fundraiser this afternoon. The event has been in the works for months. "I feel funny asking for things from people," says ToniAnn Accardi. "But this isn't about me, this is about my boys. We're just trying to raise some money and get this house to be a home that they can feel comfortable in, move around in, get to their own bedroom and reach for their own toys."

The fundraiser is being held at the Clarion Hotel in Ronkonkoma from noon until 5 p.m.

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