childhood onset centronuclear myopathy

my 14 yr old daughter has a rare genetic syndrome goldberg and shprintzen with many complications.she has always had muscle weakness.she has a 9mm syringomyelia t6-t11 but also a couple of years ago a muscle biopsy showed she had a centronuclear myopathy.i dont know which form as i have been told her consultant and others alike dont know what form it is either.   within the last week i have noticed some changes and feel something isnt quite right.
i have had to look up so much information on my own and would like to know if when onset in a myopathy is described does it mean the start of a decline with the disease manifestering? i know my daughter so much.. her ankles swell with no real pressure.she gets abdominal pain.she has ohpthalmolplegia.ptsosis.lordosis. i just see a change with her and i need to know is this or could it be the beginning of all my worst fears. i would appreciate your honesty and hope u can help in any way. marias mum lisa