Ray Fantel, Kendall Park, 8

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 cannont 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 submitted to the FDA for approval. We remain positive and hopeful. 

Ray has asked to go places and see things. In 2014, we were lucky to share some amazing experiences. Ethan and Ray saw Cirque du Soleil for the first time. Ray attended his first New York Yankees baseball game. We took our first family vacation in almost 3 years; we went to Florida and all of us swam with the dolphins. It was amazing!! In 2015, thanks to the generosity of strangers, we created more family memories.  We went to Disney for the first time and we swam with dolphins and seals as well as flew around NYC in a helicopter.

Unfortunately, while we were in Disney in 2015, Ray became sick. It resulted in us not going to the parks a few days and leaving early.  After coming home, Ray had to be hospitalized at CHOP for over 2 weeks with RSV (a very serious respiratory virus for SMA kids).  We promised Ethan and Ray that we would make it up to them by going back to Disney "soon".  We do not know how we will do this, but we will not let them down.

We love to spend time together! 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 bat. During cold and flu season, we are home all the time and play board games, iPad games and watch DVDs. In many respects we are very blessed; we have learned to be thankful for what we have.  Ethan and Ray loved our special experiences.

 

 

How can I support the Fantel Family?

  • 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" Ray's Flamingos on Facebook to keep up with Ray's adventures and fundraisers. 
  • View and share Ray's video to bring awareness to SMA and help the Fantels raise much needed funds for his power wheelchair. 
  • Click here to make a tax deductible donation to Steps Together.  Steps Together is a Hillsborough based 501(c)(3) organization that assists families in our community facing a medical crisis.   Steps Together assists all the families we detail.