Effective January 2021, direct financial relief from the funds raised by Steps Together will be available to families for a maximum duration of 24 months. We fully recognize that for most of those we help, the medical and financial impacts are much longer than this period of time, if not lifelong. For that reason, we remain committed to sharing their stories on our website, social media outlets and emails for as long as they need. They are always a part of our Steps Together family and our community of support. Direct support of the Fantel family is encouraged through their personally established methods of giving.
WAYS TO HELP:
Anyone wishing to make a tax deductible donation to the Fantel family, please go to www.rayfantel.com for more information and a donation link.
Donors can also click here to contact Marcy Fantel (Ray’s mom) directly.
“Like” The Adventures of Ray and Bacchus on Facebook to keep up with Ray’s adventures and fundraisers.
RAY’S STORY:
RAY’S STORY:
I gave birth to Ray, our second child, in October 2008. When Ray was 4 months of age, we went to our pediatrician for his well checkup. 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 recommended we see a neurologist.
Shortly thereafter, we went to see Dr. Richard Finkel, a neurologist (and long-time SMA researcher and public speaker) at Children’s Hospital of Philadelphia (CHOP). We will never forget March 30, 2009 when we received a tentative diagnosis of Spinal Muscular Atrophy Type 1. Dr. Finkel said, “I hope it is not SMA, but it seems highly likely.” Matt Googled it while we were in the office and he found out SMA is an incurable, terminal disease. Moreover, SMA 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. I remember Matt holding me while I cried hysterically in the parking garage.
We love our 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.
Ray never says that he cannot stand or walk. In fact, he says he WILL stand and walk someday. We love his attitude and do not tell him he will not be able to walk. No one knows what the future holds.
In fact, there are several drugs in clinical trials and one was approved by the FDA in December 2016. The drug, SPINRAZA, is injected into the spine. Ray started receiving the drug in March 2017 and has had 18 injections so far. Now that he received his loading doses, he will receive 3 injections per year so long as insurance approves it (the drug costs $125,000 per injection). Since June of 2017, Ray has been going to Project Walk 4 hours a week for therapy to help him wake the muscles up. Unfortunately, Project Walk is not covered by insurance and costs $440 per week. Who knows what the future will hold, but we are all excited to see!
In 2019, Ray was gifted a bernedoodle to be his service dog. We were training him before Covid started, but we were home so much that Bacchus was impacted by us and him being home so much. We hope to find an exceptional board and train program to refocus him and resume his training.
In late 2021, we submitted a new power wheelchair to Ray’s insurance companies. This power wheelchair will allow Ray to stand up and drive his chair. He loved it when he tried it and is very excited to have this chair.
We do not want Ray’s life to revolve around doctor and therapy appointments. In many respects, he is a typical 13 year old. He loves to go places and see things even though Covid put that on hold. He loves to go on adventures and day trips. He loves animals, so he loves going to zoos and aquariums. He loves baseball, especially the New York Yankees. Most of all Ray loves going to NY to see Broadway shows.
Spending time as a family is extremely important to us! When it is not cold and flu season, we go bowling, swimming and to the movies. Ray goes to Ethan’s baseball games and cheers for his big brother. Ethan likes going to Ray’s Miracle League baseball games and helps Ray when he is at bat. During cold and flu season, we are home all the time and play board games, iPad games and watch movies. In many respects we are very blessed; we have learned to be thankful for what we have.