Penelope’s Story

Penelope was diagnosed with spinal muscular atrophy (SMA) when she was 3 days old. My husband and I found out through genetic testing during my pregnancy that we were carriers for SMA.

After that, we were very vocal about making sure it was in our chart and every doctor and nurse knew about us being carriers.

When Penelope was born, we did not see symptoms right away. We had already been in touch with a neurologist and were waiting for insurance approval for gene therapy when we began noticing weakness in her arms, legs and neck.

The news finally came that the gene therapy was approved. On St. Patrick’s Day, when she was 24 days old, she received the life-changing treatment. Since then, she has continued to make improvements and surprise us every day.