Children With Rare Diseases

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jeevan
Posts: 23746
Joined: Fri Aug 12, 2016 2:28 pm


Re: Children With Rare Diseases

Postby jeevan » Wed May 24, 2017 4:21 pm


Grace loves everything to do with Disney, especially Mickey

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She has sacral agenesis, a heart murmur, pvl and a misplaced spleen.


Heidi enjoys going to the cinema, eating out, putting the make-up on, having her nails painted and dressing up as Disney princesses. She absolutely adores animals and going on family days out


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She has Ehlers Danlos syndrome type 3. It is a collagen disorder that makes her joints to partial sublux (dislocate) and to fully dislocate. She also has low muscle tone which causes her to be very unsteady on her feet, it also causes tiredness & severe chronic pain around the joints.






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