goldberg and shprintzen syndrome syringomyelia and centronuclear myopathy and ophthamoplegia

My daughter is 14 this august and in the past year and a half she has been diagnosed with a syringomyelia T6-T11 as well as a centronuclear myopathy and also ohthamoplegia and she also has learning difficulties.she has a list of other problems il list but these are my main concern. she has been complaining of pains in her chest and neck and only today her abdomen which she said tends to hurt more when she stands up.it also seems to come and go.hopefully it will just be little tummy pains but with marias history we have to keep more of a watchful eye on her.
marias syrinx is worrying as it is 9mm.she has been falling over a lot lately and she gets very upset its heartbreaking but she said her leg just gives on her.she is under a number of specialists and consultants but as the syndrome is so rare they cant give me any answers and im finding that very hard to except.iv learnt myself as much as i can about every medical problem maria has but im not a doctor and i dont know where to turn.as well as the problems mentioned maria also has:-
Lumbar lordosis
Evolving spastic paraparesis
She walks spastic gait
Increased muscle tone
Winged Scapula
Cleft palate
Proximal muscle weakness
Poor trunkal muscle control
Microcephaly
And maria also has problems with her eyes:-
Ptosis
Large exophoria
Corneal hypoaesthesia
Punctuate changes in the corneal epithelium
Fatigability
Limited elevation
Maria is progressively getting worse although the doctors say its nonprogressive yet they tell me they dont know what the myopathy or syndrome is or how it will effect her.12 years ago i sadly lost a 4 yr old daughter who also had this very rare syndrome which is obviously genetic.my other daughter Charley had many more complications shockingly.she died of pulmonary hypertension and had hircshprungs disease which again are very rare especially in a child.
Not knowing how all these problems are going to affect my daughter is the most frightening thing in the world.
If consultants and specialists dont know the outcome then who will?
I would have the utmost gratitude for any feedback.with thanks.Marias mum.Lisa