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Published on Feb 15, 2017
We are back! This is just a quick video showing how Nora often uses her eyes when speaking, kind of like some people use their hands. The first part of the video was filmed 7-6 months ago, but the parts with Nora and I were just a few days ago. Along with answering any questions about SMA and Nora, I will be sharing details about the decline of Nora's health, and discuss Spinraza (a new drug for treating SMA which was recently approved by the FDA.
Nora was born with a genetic disease called SMA Spinal Muscular Atrophy. Nora has the most severe form Type-1 which is degenerative and terminal. Nora was born perfectly healthy, then at four months old, she could no longer move her legs. At 6 months, she lost her ability swallow. She has to be fed through a tube in her belly. Nora's brain is not affected by SMA - inside she is just like any normal 8-year-old. Nora is one of the few children with SMA who can speak. She is difficult to understand which is why I have added the subtitles. Type-1 SMA children typically do not live more than a few years, but with the proper medical devices, logic, reason, and parents whose love knows no limit, they have a better chance. Nora turned 8 on January 23rd, 2017. The disease hasn't stopped, and it continues to weaken her. Two years ago Nora lost her ability to smile. We miss that smile more than anything else. Nora will never recover from SMA, never be cured, never improve, but most importantly, she will never give up. Despite that, we will lose this battle, and lose her. These videos Nora's legacy, the proof that she was here and how much she was loved. ---------------------- ★Connect With Us!★ ---------------------- Nora's website: http://goodentree.com Facebook: http://bit.ly/1NGxxG5 Twitter: http://twitter.com/goodentree☜ Email: email@example.com ☜ ***************************