Every parent knows the incredible joy and sense of awe that comes with the birth of a child. My husband Ethan and I felt that joy when we gave birth to our beautiful baby boy, Ezra, in May of 2012.

On the day of his birth, the furthest thing from our thoughts was that in just eight months and six days, we would have to watch Ezra lose his fight with a disease called spinal muscular atrophy. He died in our arms.

At the time, we thought he was a healthy little boy.

Ezra was diagnosed with SMA at four months of age and, until then, we had never heard of this disease. We soon learned that it is the number one genetic killer of children under the age of 2. About one in every 40 Americans is a carrier of this disease, and each year SMA claims the lives of hundreds of children like Ezra.

The statistics, grim as they are, do not begin to describe what life is like for a child stricken with SMA.

The disease destroyed Ezra’s muscular system, so he lacked basic control over his body. He remained like a newborn all his life, unable to turn his head or sit up or roll from side-to-side. Though he had some use of his arms, he could not move his legs and could barely move his feet.

With no core strength to lift his chest or his head, Ezra had to spend 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.

Ezra, like most SMA babies, had difficulty breathing. Ethan and I had to adjust Ezra’s head constantly through the day and night to help him breathe.

SMA is degenerative, and doctors cannot predict how quickly the disease will progress. So it is almost impossible to know how much time you will have with your child.

When Ezra was diagnosed with SMA, we had no idea that we would have only four more months with him.

Some may wonder how a parent continues to go on after the death of a child. I wonder that, too.

I do know that the support we have felt from our friends and the greater community has helped immensely.

One of the most important things we have done to help cope with Ezra’s death is to start a foundation called Hearts For Ezra. Our mission is to raise awareness about SMA and to help fight for a cure. It is a very powerless feeling to hear that your child has a terminal illness for which there is no cure.

Ethan and I decided we wanted to do something so that other families would not have to suffer the pain of watching their children die of SMA. We have felt the utter devastation of losing a child to this disease, so we have committed ourselves to raising money to help fund research for a cure.

In its first year, Hearts for Ezra held two community events, launched a website, and created an online video to educate the public about SMA. We also were able to donate $5,000 to Families of SMA, a wonderful organization that funds research for a cure.

But there is much more work to be done, and we need the public’s help.

We will never get Ezra back, but his spirit lives on through Hearts for Ezra. Knowing that our family is working to help defeat this terrible disease gives me hope.

Emily Bessey is the co-founder of Hearts for Ezra. She lives in Hallowell.

Hearts for Ezra will host its second annual auction and fundraiser to raise money for spinal muscular atrophy research.

The event will be held from noon to 3 p.m. on Sunday, March 9, at Hall-Dale High School in Farmingdale.

Musician Rick Charette and magician Dana Perkins will perform, and there will be children’s crafts, face-painting, balloon-making, baked goods and a silent auction.

For more information, go to http://www.heartsforezra.org


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