Marcy Fantel had the ideal life planned out for herself. As a successful Wall Street executive, she envisioned returning home from a day of work to run and play with her children in their suburban home’s backyard.
That dream changed abruptly when the younger of her two children, Ray, was diagnosed with spinal muscular atrophy, a terminal form of muscular dystrophy, at four months. Beating the odds, Ray is now four and his parents have started the process of enrolling him in kindergarten in September in the South Brunswick public schools.
The Kendall Park residents have also turned to their various communities — including Anshe Emeth Memorial Temple in New Brunswick, local businesses, and professionals — to help meet the challenges presented by Ray’s special needs.
“We’ve developed a motto here: ‘Where there’s life there’s hope,’ and people like us have to be thankful for what we have,” said Fantel.
Ray’s family, which includes his father, Matthew, and older brother, Ethan, six, try to provide a full life for Ray.
“He is a happy, funny, playful child,” said Marcy Fantel. “He wants to do things. He wants to play baseball. He wants to go ice skating. He doesn’t say, ‘Why can’t I walk or play baseball?’ We try to find other ways for him to play to fill that void so he doesn’t think he’s missing out on anything.”
But taking care of Ray, who now weighs 50 pounds, has become increasingly difficult. He cannot sit without help and must be carried downstairs to the basement to receive education and therapy. He comes up to the first floor to eat and then in the evening must be carried up another flight of stairs to his bedroom.
“Transporting him around has become dangerous,” said Fantel. “For his sake as well as my own we need to do something. Another problem is that Ray recently got a power wheelchair that weighs about 300 pounds. We can’t carry it up and down the stairs. We want him to have freedom and the ability to move around our house, but we now have to look at options.”
The family decided the best solution was to build an addition onto the first floor of their home.
Architect David Buckman of the Buckman Architectural Group in Kenilworth volunteered to design a new bedroom, handicapped-accessible bathroom and playroom, and a new therapy room and take care of getting the necessary building permits.
“Ray’s a darling kid and it’s a tough story,” said Buckman, president of Temple Emanu-El in Westfield. “It’s not easy for Marcy, but you wouldn’t know it from her attitude.”
Buckman met the Fantels at a conference of HomeFreeHome, an all-volunteer national organization that helps bring independence to individuals with disabilities through home design.
“I do a lot of volunteer work for the organization because I like to help the community not only with money but through my work,” Buckman said. “So much of my life is based on Jewish values.”
HomeFreeHome has started a fund to help the Fantels raise the $100,000 to pay for the renovations, allowing tax-deductible donations to be made through its website, homefreehome.org. The Fantels plan to start building later this month, weather permitting.
Other local businesses and professionals have offered to donate heating, air-conditioning, plumbing, roofing, and labor.
“I was raised to be a worker and I’m a proud person,” said Fantel, who holds an MBA and, before Ray’s diagnosis, worked as a financial analyst for Bear Stearns in Manhattan. Now she spends what little free time she has seeking assistance via the phone or Facebook.
The family would also like to see Ray get a Jewish education, which will come with its own challenges.
“We don’t know what it looks like for his Hebrew education,” she said, but AEMT’s Rabbi Bennett Miller told the family that “anybody in the congregation who wants a Jewish education will get one.”
Being near Ray’s grandparents, Eric and Susan Kutell of Monroe — longtime members of Congregation Beth Chaim in Princeton Junction — and Roberta Fantel of Somerset, has been helpful. They also receive support from visiting nurses.
Fantel said that her son’s illness has given her a new perspective on life. “It makes you appreciate the small things and take life a little bit slower because you don’t know how much time we’ll all have together.
“When I was pregnant with Ray I couldn’t wait to watch my children playing and chasing each other in the backyard.” She recently finally had that experience, except that Ray was in his new wheelchair. The scene, she said, was “bittersweet.”