Community Corner

The Daily Struggle of a South Brunswick Child With a Rare Disease

Ray Fantel can't sit up without assistance and has never crawled or walked due to a degenerative neuromuscular disease.

In just four years on this Earth, Ray Fantel has already outlived any and every expectation.

When he was only 5-months-old, Ray was diagnosed with spinal muscular atrophy, an incurable, terminal disease that is the most frequent genetic cause of death for infants. The average life expectancy for a child with SMA is just two years, however Ray has already doubled his life expectancy.

“We were crushed,” said Ray’s mother Marcy Fantel earlier this year. “We vowed to do everything possible to give him the best chance and make sure he enjoyed life no matter what the length of time he has.” 

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Because of the effects of SMA on his body, Ray has never crawled or walked, and can't sit up without assistance. He can't attend school because catching a cold could be life-threatening for him. A severe cold requires Ray to be hospitalized.

Ray is fed by a feeding tube and a nurse assists him for 16 hours each day in the Fantel home, where nearly all of Ray’s treatment and education occurs.

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Ray uses a small power wheelchair to get around, but there is not enough room inside the home for him to safely operate it. Ray weighs about 50 pounds and getting him up and down the stairs for therapy and education is becoming increasingly hazardous as time passes.

“This is becoming a safety issue as Ray grows,” Marcy said.  

The total estimated cost for renovations to make the Fantel home wheelchair-accessible for Ray is about $100,000. The work includes a new bedroom, a safe accessible bathroom and a therapy room with enough space for Ray’s exercise routine. The improvements will provide the freedom for Ray to operate his wheelchair.

To help achieve their goal, the Fantel family is working with HomeFreeHome, a 501(c)(3) organization that provides a fundraising website for users to make donations, provide construction materials or volunteer their skills for the Fantel’s renovation project. 

Please click here to donate whatever you can to improve life for Ray and his family.


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