SMA It's Not Too Late
Spinal Muscular Atrophy is a beast to deal with. It's terrifying to get the diagnosis and then it's a whole new lifestyle you are thrown into. Some are fortunate to have access to one of the SMA treatments being Spinraza® (Nusinersen), Zolgensma (onasemnogene abeparvovec-xioi), and Evrysdi™ (Risdiplam). Many children don't have access to these treatments but the question of each parent is the same, "What does the future hold for my child?" I can't predict the future, but I have found life-changing solutions that create a hope in an unknown future for SMA persons. I am sharing these solutions with you. Spinal Muscular Atrophy does not have to be scary. It doesn't matter, SMA type 1, type 2, type 3, or type 4 the information in this channel will be valuable to you. This goes beyond therapy options for helping a child with SMA move, these are alternative solutions that can be done with traditional therapy options like PT & OT.
SMA It's Not Too Late
My baby was unknowingly born with Spinal Muscular Atrophy. She had a weak cry, she hardly moved. Even though this is a picture she didn't move much more than what you see in the picture. While everyone moved around her she just laid there. She should have been evaluated and the doctors and nurses should have known not to swaddle her. Her system couldn't handle it. On average 40 babies were born a month, there were too many developmental red flags that my baby was not okay. #rare genetics #lowtone #floppybaby #hypotonia #weakbaby
2 years ago | [YT] | 2
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SMA It's Not Too Late
I was worried sick about my baby and everyone told me she was okay. Does she look okay to you? NO. This is not normal. Don't tell people their baby is okay when you don't know! #babynotokay #smatype1
2 years ago | [YT] | 1
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