In many ways, Ray Fantel is a normal 4-year-old boy. He wants to run, jump and play with his older brother. In another way, Ray is very special. He has already lived twice as long as he was expected to.
Ray was diagnosed with spinal muscular atrophy type 1 when he was 5-months-old. SMA is an incurable, terminal disease and the most frequent genetic cause of death in infants. The average life expectancy of a child with SMA is 2 years.
“We were crushed,” said Ray’s mother Marcy Fantel of the diagnosis, “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.”
Today at 4-years-old, Ray has a beautiful smile and speaks softly. Because SMA is a degenerative neuromuscular disease, Ray cannot sit up without assistance and has never crawled or walked.
A feeding tube helps him get the nutrition he needs. A nurse provides assistance in the Fantel home 16 hours each day, and nearly all of Ray’s treatment and education happens at home.
One highlight of Ray’s week is the physical and occupational therapy he receives outdoors on horseback at Special Strides Therapeutic Riding Center in Monroe Township.
Ray uses a small power wheelchair for mobility, but there is currently not enough room in the Fantel home for him to safely maneuver it. He sleeps and bathes upstairs with the rest of his family, but receives therapy and education in the basement.
Ray now weighs 50 pounds and carrying him up and down stairs has become more dangerous.
“This is becoming a safety issue as Ray grows,” Marcy said.
The total estimated cost of renovations needed to make the Fantel home safe and wheelchair-accessible for Ray is $100,000. Volunteer architect David Buckman of the Buckman Architectural Group in Kenilworth designed a new bedroom, a safe accessible bathroom and a therapy room with enough space for Ray’s vital exercise routine. These life-changing home modifications will give Ray the freedom to use his wheelchair and participate more fully in family life.
To help fund the renovations, the Fantel family is working with HomeFreeHome, an all-volunteer 501(c)(3) organization. HomeFreeHome provides a fundraising website (http://homefreehome.org/our-projects/build-freedom-for-ray) that allows users to make monetary donations, provide construction materials or volunteer their skills for the Fantel’s renovation project.
The Fantel family hopes that with community support, they will be able to complete the renovations that will help Ray thrive. In the interim, they are working on another set of important plans—organizing Ray’s fifth birthday party.