A year ago, our sweet son, Ezra, lost his fight with spinal muscular atrophy. He was only 8 months and 6 days old.
Ezra brought us so much joy and happiness, and I was amazed by how large my heart grew after he was born. My husband, Ethan, and I watched proudly as our daughter rose to the role of big sister, and we delighted in seeing Ezra light up when she came into our room to see him each morning. Then we had to look on, powerlessly, as our child died. The pain at times has felt unbearable. It is not as if the heart simply shrinks back to size after losing a child. The emptiness remains. It feels cavernous, even a year later.
Before Ezra was diagnosed, we had never heard of spinal muscular atrophy. We learned quickly about this devastating disease that is the No. 1 genetic killer of children younger than 2. About one in every 40 Americans is a carrier of the gene, and each year SMA claims the lives of hundreds of children like Ezra. As a result of this experience, we have learned that carrier screening is available, affordable and relatively simple. Even if you have no family history of genetic diseases, you and your partner could unknowingly be carriers for a disease like SMA.
The statistics are grim, but they cannot reveal what life is like for a child with SMA. The disease devastated Ezra’s muscular system, so he lacked basic control over his body. He remained almost like a newborn, never able to turn his head or sit up or roll from side to side. He could barely move his arms and legs. Like most SMA babies, Ezra had serious trouble breathing. Ethan and I had to adjust Ezra’s head constantly through the day and night to help him breathe. Ezra spent most of his life laying on his sides and back. His favorite spots were either in our arms, or lying on a little beanbag chair where he could sit propped up as we read and sang to him.
Spinal muscular atrophy is degenerative, and it is almost impossible to know how much time you will have with your child because doctors cannot predict how quickly the disease will progress. Ezra was 4 months old when he was diagnosed with SMA; at the time, we had no way to know we would have only four more months with him.
Over the past year, Ethan and I have had to learn how to live without our little boy. We decided, soon after Ezra died, that we wanted to do something so that other families would not have to suffer the pain of watching their children die of SMA. Because we have seen how heartbreaking it is for a little baby who is completely in awe of the world around him to not be able to move, and because we have felt the utter devastation of losing a child, we are committed to helping to find a cure for this disease. With Ezra’s pediatrician, we started a foundation called Hearts For Ezra. Our mission is to raise awareness about SMA and to help fight for a cure.
Hearts for Ezra had a busy first year. We held two community events, launched a website, and created an online video to educate the public about SMA. We also donated $5,000 to Families of SMA, an organization that funds research for a cure.
But there is much more work to be done, and we need your help. Hearts for Ezra will host its second annual auction and fundraiser to raise even more money for research. The event will be held from noon-3 p.m. March 9 at Hall-Dale High School in Farmingdale. Musician Rick Charette and magician Dana Perkins are scheduled to perform, with the Jon James serving as master of ceremonies. The event also will feature children’s crafts, face-painting, balloon-making, baked goods and a silent auction to raise money for the Hearts for Ezra Foundation. Our goal is to raise $20,000.
Nothing can ever completely fill the cavernous hole in my heart. But knowing that our family is working to help defeat this terrible disease gives me hope. Please join us as we fight for a cure.
Emily Bessey, of Hallowell, is co-founder of Hearts for Ezra (www.heartsforezra.org).