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  • my 14 yr old daughter isn't well

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    Old 02-05-2009, 07:13 PM   #1
    marialou's Avatar
    Join Date: Feb 2009
    Location: uk
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    marialou HB User
    my 14 yr old daughter isn't well

    im not sure how this sight works but i dont know what to do or where to go 14 year old daughter has a rare syndrome and every complication that comes with it.she has a 9mm syrinx inside her spinal cord T6-T11 and a centronuclear myopathy,an extremely rare untreatable incurable muscle disease. she has goldberg and shprintzen syndrome and there is only 14 in the world.its genetic and 12 years ago i lost my 4 yr old daughter who was born with this disgusting syndrome but she had heart complications also. ive looked everywhere and tried everything,its just so rare even specialists involved dont know how it will progress,its breaking my heart

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