Our Story

On August 2, 2008, we were given the greatest gift anyone could ever receive. Our beautiful son, Eli, was born and immediately, we were in love. He was such a beautiful baby and gave us so many smiles and laughs. I'd never known joy so great. An entire day of fussing could be forgotten with just one little smile. He had some health issues that kept us going back to our doctor for advice, but nothing that caused us alarm. We enjoyed our first Halloween, Thanksgiving, and Christmas.

A few days after the Christmas holiday, we had a scary incident that had us rushing to the emergency room. The next day brought specialists who delivered the worst news any parent could ever hear: We think your son has spinal muscular atrophy. I had no idea what that meant, but after asking some further questions, we were told he would not be with us for long. I was devastated. I worried my whole pregnancy about something being wrong with my baby, but he arrived and was okay. What happened?

It did not take long for SMA to ravage Eli's body and on January 14, 2009, he passed away peacefully in my arms. I have since met many other families who have been affected by this horrible disorder. They are amazing families and my heart breaks for each and every one of them. The only comfort I have is the determination all of us have to help find a cure for SMA so that no other parents are given the horrible diagnosis.