When Ray Fantel was an infant, no one expected him to live long enough for his family to have to worry about such things as taking him on vacation.
The Kendall Park boy was diagnosed at five months old with spinal muscular atrophy, a terminal form of muscular dystrophy with a life expectancy of two years.
But today, at age five, he wants to experience some of the things other children do, said his mother, Marcy Fantel. And thanks to the Friendship Circle of Greater Mercer County and other charities, they hope to buy the specialized van that can make an ambitious family trip possible.
The family had outgrown its former van, which couldn’t accommodate both a power and a manual wheelchair and the medical equipment necessary for a trip of any length.
“We had a van where the rear entry wasn’t safe anymore,” said Fantel. “His medical equipment should go right behind him, but it was getting too crowded to do that.”
Fantel and her husband, Matthew, were able to sell their old van for approximately $40,000, but need another $22,500 to pay for their new, larger vehicle.
Marcy Fantel said the family has received about $12,000 from various charities, and the Friendship Circle has launched a campaign to raise the remaining funds. The group is affiliated with the Chabad of Greater Mercer County in Princeton.
“She deserves to have one less thing to worry about,” director Mushky Wilhelm told NJJN.
She said she had visited the family and been impressed each time by their cheerfulness and positive attitude, including that of Ray’s seven-year-old brother, Ethan. “Every time I talk to Marcy she’s just so upbeat, and Ray is such a good positive kid,” Wilhelm said.
Wilhelm said she also hopes to send teen Friendship Circle volunteers to the home. Ray had not been able to attend many Circle activities during cold and flu season out of fear he would get sick.
When NJJN called Fantel June 17, she was about to serve ice cream for Ray’s monthly birthday celebration, a family tradition. His actual birthday is Oct. 17.
Fantel said the larger van needed to be outfitted with a wheelchair lift and a mechanism to bolt the wheelchair to the floor, space for medical equipment, and a seat for a caregiver who must be next to Ray at all times.
Fantel, who gave up her career as a financial analyst at Bear Stearns to take care of Ray, said she is grateful to the many individuals and groups that have rallied to the family’s support over the last several years, including the Jewish Social Service Committee of New Brunswick and Highland Park, Inc.
HomeFreeHome, a volunteer organization that helps bring independence to disabled individuals through home design, established a fund to help the family raise $100,000 to renovate their home.
This past year, the Fantel boys were “adopted” by the Princeton University Tigers baseball team.
“We have our tzoris, but we’ve met such incredibly generous and supportive people,” said Fantel. “Along the way we’ve heard these terrible stories, and we feel grateful for what we have. In many respects we’re lucky for what we have.”
Plans are for Ray to enter first grade in September at Cambridge School in Kendall Park, where the children have been “heartwarmingly accepting.”
Fantel said she expects the van to last the family 10 years and enable them to take a longed-for family vacation.
“The boys are getting older, and they want to see things and explore,” she said. “We are now planning to swim with the dolphins in November. We hope to go down to Disney World. We couldn’t do any of this in the old van. It’s all about family and creating memories.