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 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, 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. 2016 has been an amazing year for us as well. We saw Hamilton on Broadway, which has become our favorite Broadway show. Ray also surfed in the Jersey Shore with some experienced Coast Guard rescue workers, lifeguards, physical therapist and other volunteers as part of Best Day Foundation. Nothing will stop Ray!
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 love our special experiences.