New Freedom for Ray
Video Update: This is Ray!
In many ways, Ray Fantel is a normal 4 ½ -year-old boy. He wants to run, jump and play with his older brother. In another way, Ray is very special. He 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.”
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,” explained Mrs. Fantel.
The total estimated cost of renovations needed to make the Fantel home safe and wheelchair-accessible for Ray is $100,000. HomeFreeHome volunteer architect David Buckman 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, friends of the Fantel family created the video above. HomeFreeHome and the Fantel family hope that with support from family, friends and others, they will be able to complete the renovations that will help Ray thrive. You can help improve Ray’s quality of life by sharing this video on Facebook, Twitter, any other social media, and email. The more people who view it and see how special Ray is, the better.
Help Build A Safe Home for Ray in New Jersey
When Ray was 5 months of age, his parents took him to the pediatrician for his well checkup. His mother explains, “We knew Ray seemed floppy, especially compared to our older son. We assumed he would catch up. At that visit, our pediatrician expressed concern with Ray’s low muscle tone and sent us to a, a neurologist at Children’s Hospital of Philadelphia. We will never forget March 30, 2009, when we received a diagnosis of Spinal Muscular Atrophy Type 1. SMA is an incurable, terminal disease and is the #1 genetic killer of infants. The average life expectancy of an infant diagnosed with SMA is 2 years of age. We were crushed. We love our two boys more than anything. As we digested Ray’s diagnosis over the next few months, we vowed to do everything possible for him – to give him the best chance and to make sure he enjoyed life no matter what the length of time he has.”
Now 4 years old, Ray has a beautiful smile, can taste some foods by mouth, he speaks softly and hold up his head. He tells us what he wants to do. He wants to stand, jump, and sit. However, SMA is a degenerative, neuromuscular disease. As a result, Ray cannot sit up without assistance, he has never crawled or walked. He has a feeding tube to help him get the nutrition he needs.
Ray has a small power wheelchair, unfortunately there is not enough room in the house for him to maneuver. His mother says, “ Our biggest problem right now is where Ray sleeps and bathes. We love the fact that he is upstairs with us, but carrying Ray up and down stairs has become more and more dangerous – he weighs 40 pounds. Many of his nurses do not feel comfortable or secure with this situation. This is becoming more hazardous and a safety issue as Ray grows.”
Volunteer Architect David Buckman of the Buckman Architectural Group in Kenilworth, New Jersey, has designed an addition that will include a new bedroom, a safe accessible bathroom and a playroom with space enough for Ray’s vital exercise routine. With the help of these life changing home modifications, Ray will be have the freedom to drive his power-chair and participate more fully in family life.
Please help us build this new home for Ray. Your donation, of any size, is important and much needed. Since HomeFreeHome is an all-volunteer organization, your donation to will go directly to help Ray and his family.
Please consider donating and volunteering your skills or construction materials. HomeFreeHome is an IRS designated 501(c)3 tax-exempt charity and you will receive a receipt. Call 516 883 0403 or email Laura Montllor, AIA at Architect@HomeFreeHome.org.
As a HomeFreeHome supporter, YOU will pave the way for the success of many more projects to help people living with physical disabilities. On their behalf we thank you for your contribution, continued generosity, and encouragement. Together we can accomplish a lot and make a dramatic difference.