Community Corner

A Special Space for a Special South Brunswick Kid

Ray Fantel, 5, suffers from spinal muscular atrophy, a disease that prevents him from walking or holding his head up.

The saying goes that it takes a village to raise a child.

In the case of South Brunswick's Ray Fantel, 5, it took the contributions of so many people to raise Ray's hopes as he got a special space to call his own. Diagnosed with spinal muscular atrophy at just 5-months-old, Ray has never crawled or walked, and he can't sit up without assistance. 

As Ray has grown, getting him up and down the stairs for therapy become increasingly difficult on the entire family, thus began an effort to raise nearly $100,000 to make the Fantel home wheelchair-accessible, along with a new bedroom, a safe bathroom and a therapy room with enough space for Ray’s exercise routine. That effort came to an end last month after the finishing touches were put on Ray's new room through the Special Spaces program.

"I'm just amazed and I honestly don't know how to react," said Ray's mother Marcy Fantel. "We saw people we never met before stopping by and saying someone mentioned to me the project and you're doing for Ray and I want to help you free of charge. There was a lot of that going on."

Special Spaces is a non-profit corporation that aids in the construction of specially designed rooms for children with a critical illness. A team interviews each child to design an individualized theme for the room. Following that, local businesses and organizations help fund the project. 

"We look at what each family needs and what are the things that might be able to help them with what they're going through," said Special Spaces Affiliate Director Claudia Biondi. "Usually the biggest need we find is just for a peaceful environment."

Ground was broken in April on the addition to the Fantel home for Ray, who chose a theme of dinosaurs for his new room. The fundraising portion for the project was tough and the Fantels still have some expenses to pay off, but Marcy said the support from the community was nothing short of astounding.

"We have such a great sense of appreciation for so many people coming together to help us out," she said. "There was a ton of support from South Brunswick and the surrounding areas. People helped out in anyway they could. We tried to remain private with Ray's illness and didn't think there was any reason to come out to the public about it until we needed help. To get the support we got after we went public about it was so heartwarming."

Marcy said the contributions of so many contractors for all kinds of work for the house was amazing, as she said they rescheduled paying jobs to come work on the Fantel home for free or at a reduced cost. In addition, businesses like Bob's Discount Furniture donated the new furniture for Ray's room, along with roofers, plumbers, painters, electricians, and many more who helped the family.

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The average life expectancy for a child with SMA is just two years, so Ray has already doubled his life expectancy. Marcy said the new addition has also raised Ray's spirits immeasurably.

"It's a place where Ray can drive around his power wheelchair and it gives him independence to drive and manuver around that space," she noted. "It's also a huge relief for us to not have concerns about safety and carrying him up and down the stairs. To see how happy he is when him and (brother) Ethan play in that space or just relax and watch TV brings a smile to our face as well."

Find out what's happening in South Brunswickwith free, real-time updates from Patch.

With the final touches complete on Ray's room, Marcy said the family remains forever grateful to the dozens of businesses and volunteers who donated time or money to help make the dream project a reality.

"There were so many people involved. It took so many people to come together and do it," she said. It's just overwhelming what everyone did for us. They were strangers and now they're friends. There are some really great people in this community, simply amazing."

As a result of Ray's illness, he can't attend school because even catching a cold could be life-threatening, with a severe cold requiring Ray to be hospitalized. So now Ray is beginning a new adventure as he prepares to attend school remotely through the power of technology, with a computerized robot displaying his face in class as he joins with his new classmates from the safety of the Fantel home.

"He's so excited. What many people consider normal things, like going to school, is so truly special to us," Marcy said. "Everything takes on more of an impact. We never knew if Ray would be able to go to school. So to see him get to this point in his life, it's exciting, it's something new. So this normal to us is really special."


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