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I gave birth to Ray, our second child, in October 2008. When Ray was 5 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 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.
Since March 2009, life will never be the same. We have learned to take life one day at a time and try to enjoy every day as best we can. In June 2009, we learned all too well last year how medically fragile Ray is and how serious respiratory illnesses are for Ray. He was in the ICU at CHOP for 22 days and intubated twice with a cold then pneumonia. It was so scary to see someone so young and innocent breathing via machine and wondering what would happen next. In August 2009, he was back in the ICU at CHOP for his g-tube surgery. We knew Ray would lose his ability to safely swallow as part of his SMA and wanted to make sure we could properly deliver nutrition via the gtube. In August 2010, he was in the ICU at CHOP for 27 days with a cold and partially collapsed lung. In March 2011, Ray caught the flu while we were on vacation and was in the ICU for 12 days. Right after Thanksgiving 2012, he caught a cold and he was admitted to the ICU for 14 days. Again in November 2013, he caught a cold and was in the ICU at CHOP for 15 days; thankfully, we were home by Thanksgiving. Every illness and hospitalization is very stressful, as we never know what will happen and can only wait and hope Ray’s body fights and recovers.
SMA is a degenerative, neuromuscular disease. As a result, Ray cannot sit up without assistance, never crawled or walked. He has a feeding tube to help him get the nutrition he needs. He has life saving medical equipment in the house and we have 16 hours of nursing a day. We never thought life would be this way, but we try our best to be a normal family and spend as much time together as possible. We have learned to take life one day at a time and try to enjoy every day as best we can. Whenever possible, I try to do fun activities with Ethan and Ray. I want Ray to be happy and do as many normal kid activities as possible – like going to the park, zoo, Sesame Place, movies, pool, etc.