August is SMA Awareness Month [#SMAawareness] -Erin Elizabeth

10014603_716577655040285_1074872268_nSome 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

Currently there are no tests during pregnancy that screen for SMA. Most of us parents find out the heartbreaking way by watching our children suffer illnesses and not meeting normal infant milestones. Bob had heard of SMA with his cousin, but I had never heard of it until Sofia was diagnosed. Even though Bob had heard of this disease, never did we think it would land in our world with our baby girl.I ask you for the month of August- if you could help us in these few little ways. It will make all the difference in the world!

** Share Sofia’s Angels for SMA page. Also join many of the other pages for the children who live with SMA. All of these kids are amazing and beautiful! Us as parents in this community love to share our children and are open to answering questions anyone may have.

** Change your profile picture to Sofia’s picture. For us she is our face of SMA.
** Change your profile picture to the SMA ribbon symbol or anything pertaining to SMA- if one person asks, it’s one person who will learn of SMA.** We will be sharing facts throughout the month regarding SMA. SHARE the facts and links so that others may learn about how SMA affects not just those with SMA but also how it affects our friends and family living with them!!

** Visit Families of Spinal Muscular Atrophy (FSMA) FB page and Curesma.org to see the latest research developments for a cure. You can also learn how to become involved, see fundraising events and purchase SMA merchandise which can also spread awareness!

Thank you in advance for helping us make SMA known more to anyone willing to learn about SMA!!!

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