By Ed Birch, Special Writer
The Fantel Family, who reside on Eastern Drive in Kendall Park, are appealing to the South Brunswick community for either financial or physical assistance with much needed home improvement to their home.
The changes are needed for son Ray, 4, who was diagnosed with Spinal Muscular Atrophy at five months old.
The incurable and terminal condition effects a motor nerve from his spinal cord. It is the most frequent cause of death in infants according to website dealing with the disease.
Studies have found that the average life expectancy of a child affected by this condition is 24 months.
Mother Marcy Fantel and her husband Matthew, who have been married for 14 years, have “vowed to do everything possible to give Ray the best possible chance of living and to make sure that he enjoys life, no matter what length of time he has.”
Dr. Richard Finkel, a neurologist and researcher from Children’s Hospital of Philadelphia made the diagnosis.
Statistically, one of every 40 persons are carriers of the disease, and one in every 6,000 persons are actually born with the disease.
Ray is not able to sit up without assistance and uses a feeding tube to provide the needed nourishment.
The family has the services of nurses 16 hours per day and nearly all of the treatments and education that the child receives occur in his home. The couple also has a six-year-old son Ethan, a student at Cambridge Elementary School.
According to the family, the highlight of his treatment is the physical and occupational therapy that the youngster receives at Special Strides Therapeutic Riding Center in Monroe Township.
The family relies on a small power wheelchair for moving him around their house.
There is limited room in the current structure and Ray now weighs more than 50 pounds and physically moving up and down the stairs is considered dangerous, according to the family.
A volunteer architect has designed plans to modify the structure and estimates that these needed improvements will cost upwards of $100,000.
Plans include a new bedroom, specially designed bathroom, and exercise rooms for both the Fantels and the needed equipment for Ray.
The couple said it experiences difficulties retaining nurses to assist with Ray’s care due to because of the physical labor involved in carrying him up and down the steps with the support required.
In addition to the life saving equipment that is in their home, the Fantels “try our best to maintain a normal family life, and spend as much time together as possible. When ever possible, we do fun activities with Ethan and Ray such as going to parks, zoos, the movies, swimming, and Sesame Place,” according to mother Marcy Fantel.
To assist with the needed renovations, the Fantel family is working with HomeFreeHome, an all volunteer 5 501c(3) organization for donations.
The website is homefreehome.org/our projects/build-freedom-for-ray/ that allows donors to make monetary donations, provide construction materials, or volunteer their skills towards the project.
