“SMA, Spinal Muscular Atrophy” he said. “I’m sorry. It is terminal. The only thing I can offer is the comfort in knowing she wont suffer for long. Take her home and love her. She wont be here for long. I suspect she has type 1, the most severe.”
Our SMA journey had begun December 15, 2009 at 10:00 am. We remember the day like it was yesterday. How can you forget the day the dreams you had set for your child are shattered? After receiving Ari’s diagnosis our lives had changed. We had a very challenging 2010, a large portion of it spent in the hospital. We had saved Ari’s life, learned about machines, adapted our home to be a mini PICU, met the most amazing families we could ever imagine and the list could go on and on. We do not hate SMA, it is a part of us forever. We have learned to accept Ari’s diagnosis. All we can do is embrace it and take one day at a time.
We have chosen as a family to stand up and fight SMA! We are making the commitment to raise 5K for Dr. Kaspar and the Gene Therapy program at Nationwide Children’s Hospital/OSU. We feel this program is the most promising to stop the progression of SMA. We aren’t just doing this for our daughter, we are doing this for our SMA family!