Nine years ago, when 6 week-old Corey was admitted to the hospital for generalized weakness, everyone assumed that he had some sort of infection. His mother, Stephanie, thought that he would get some medication, maybe some IV fluids and then she would be able to take her little boy home again. On the third day of his hospitalization, however, Stephanie overheard a few residents talking. She heard the use the term, ‘SMA’ for the first time. A young doctor started a sentence with the words, ‘if he lives to 6 months’ and ‘if he lives to a year.’ 

Suddenly, Stephanie’s life was turned up-side-down. Corey did indeed have SMA (Spinal Muscular Atrophy) and he actually did not live to see 6 months. When Corey was born, a diagnosis of SMA was a death sentence. Only months after Corey was born, clinical trials for a treatment for SMA were developed. Now, that medication is so successful in treating SMA that we are really nearing the day that these children will live with SMA and not die from it.

Since Corey’s death, Stephanie has done so much to support this cause. She was instrumental in getting SMA testing on the newborn screen in the state of Ohio. She speaks to groups nationally as well. I know that after losing a child, I want to do anything that I can to prevent another parent from feeling my same pain. Stephanie feels the same way and her work has truly helped prevent some many deaths.

Today, we talk about her work in the Cure SMA organization, but we also discuss her personal grief journey as well. Stephanie talks about the pain of returning home without her baby boy in her arms. We discuss learning to help her then 5 year old daughter grieve in an open, honest way and the pain that comes with watching our children grieve.

Now, so many years later, there are fewer and fewer people who remember baby Corey, and that makes some days even harder than in the beginning. It certainly make those who remember and understand the lasting pain all the more precious.