SMA Type 1 - Ally moving her hands to "If you're happy and you know it"

Ally has Type 1 Spinal Muscular Atrophy and has almost no movement since her body does not make protein for her muscles. Luckily, her brain in unaffected and she is a super happy child. She recently started moving her hands and limited lower arms to participate in songs during her homebound school. She has not moved this much in years, but we just went up on her clinical trial drug of hydroxyurea and her levocarnitine. Ally also uses liquid albuteral experimentally, all in hope to stimulate her SMN2 to make protein for her muscles. She is somehow getting stronger instead of weaker. We are soooo proud of Ally and all her efforts.

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People & Blogs

Tags:

• SMA
• Spinal
• Muscular
• Atrophy
• Type

[Finkemeier525]

@tina61775 Thank you for your support. MaKaighlah is actually in surgery as we speak. So far all is well. We live in New Mexico. And thank you for the link!!!

[tina61775]

@Finkemeier525 Best of luck with trach surgery and training. Please do not hesitate to contact me if I can help in anyway. Ally has a blog site at angelally com (insert .) and we have LOTS of pics and videos posted on there if you click on the picasa link. What state are you in?

[wiggyandtee]

She's rolling her eyes. She probably thinks "What kind of nut cases are these guys?

[MultiMusicus]

God bless you , hast Du Angst - Kleines?

[p0ncho]

Beautiful little angel, god bless you!