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  1. Pain in legs or feet

    [QUOTE=Anja;872952]Hello, I wish you a very happy new year :hi!! My name is Anja and my daughter Michelle (12 years) is suffering from MPSIIIB. We come from Germany. Michelle has many skills but during the last few months she seems to have pain when she is walking (Michelle turns her feet outward when she is going - but from the beginning ). Unfortunately it is not possible for her to localize the pain. I always thought that the cognitive skills disappear first and then the kids have difficulties ...
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  2. Pain in legs or feet

    [QUOTE=Anja;872952]Hello, I wish you a very happy new year :hi!! My name is Anja and my daughter Michelle (12 years) is suffering from MPSIIIB. We come from Germany. Michelle has many skills but during the last few months she seems to have pain when she is walking (Michelle turns her feet outward when she is going - but from the beginning ). Unfortunately it is not possible for her to localize the pain. I always thought that the cognitive skills disappear first and then the kids have difficulties ...
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  3. Hello from Upstate NY

    [QUOTE=BrittanyClubbs;869286]Hi I thought I would introduce myself. I am the mommy to three wonderful hunters boys. My two oldest Hunter 3 and Kingston 2 were diagnosed with MPS 2 January 15th 2012. They started enzyme replacement therapy April 2012 at the ages of 1 in a half and 2 in a half. Shortly later we found out we were expecting again and did the early CVS testing and found out at 11 weeks that he was another boy. From there his dna was sent to a lab in California and was confirmed that ...
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  4. Anyone had an aortapexy?

    I have two sons with Hunter's and a younger daughter. My sons have been on ERT for 9 years. They are now aged 19 and 17 and my daughter is 14. My older son, Tom is at university while his younger brother Louis is still at school. Tom is going to have an aortapexy operation in December as his trachea is being compressed from the outside and I wondered if anyone else out there has had this operation?
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  5. Hello all so glad for reply me

    Hello every one i am so glad to hear from all you people and reply me well i am really thankful you to suggest me and advice me.I tried a lot to contact some helpful people and companies where i can get help for the treatment of my daughter but like you all know that i live in pakistan so i have a lot of problems for contacting those peoples. There for i request to all of you that if you know any way for me that how i can get treatment for my daughter than please guide me advice me or contact with ...
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