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annalese for life

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annalese  has fibrodysplasia ossificans progressiva at only 5years old to young to understand she becoming prisoner of her own body.she has a fused neck an lost use of both her shoulder joints which means at just 5yrs old she cant even brush her own hair,or even the simple things like going to toilet she cant always wipe herself so needs someone with her all the time.she uses a stick with a hook to put her coat on,a big shoe horn to put her own shoes on,she also uses a helmet because of the risks, knee pads wrist support,she also uses a wombat chair at home so she can sit comfortable an a electric one in school,

annalese is battling one of the worlds rarest most disableing gentic conditions effects one in two million people,ant bump or fall can trigger painfull swelling that forms into bone.at this moment in time their no known cure.one day she could wake up an be frozen stiff for rest of her life

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