Some of you may or may not know that I am a pediatric nurse. This March I lost my favorite kiddo in over a decade of nursing. She had a disease called Spinal Muscular Atrophy. It is the NUMBER ONE genetic killer of infants.
I wanted to share a little about Spinal Muscular Atrophy, and give everyone an opportunity to know a bit about the disease that took not only Sofia, but many of her friends. There is no cure, and not a lot of treatment options for these little warriors. This disease ravages the body, but leaves bright beautiful children with completely intact mental function. Can you imagine knowing everything you want, everything you need and not being able to always communicate it? Can you imagine watching you completely healthy, beautiful infant slowly lose motor function until they can no longer swallow, speak, crawl, roll over, or even scratch their own nose?
THIS IS SMA an ugly disease with the most beautiful angels. – Erin Elizabeth