centronuclear myopathy goldberg and sphrintzen syndrome

goldberg and sphrintzen syndrome is an exceptionally rare syndrome and i have over the years found it hard to get information for my daughter who is 13 yrs old.i had a little girl who died 11 yrs ago who also had the same syndrome but she had heart complications and died of pulmonary hypertension aged 3 yrs and 9 mths. my 13 yr old has just had a muscle biopsy done and its discovered she has centronuclear myopathy and now has to wait to see specialists in that field as well as many other specialists.its very hard to explain whats wrong to my daughter when most doctors cant tell us, has anyone experienced anything like this in the hope it could giv us some insight as to what the future holds for my daughter.