PLEASE CAN U BE HONEST WITH ME?

Hi.my name lisa and i have so much to say i dont know where to start.i will try and get straight to the point.i have a beautiful daughter 14 Maria.Maria has a rare syndrome 'Goldberg and Shprintzen syndrome'.we have found in the last couple of years she has a centronuclear myopathy and a 9mm syringomyelia -T6-T11.she is struggling a lot as she is getting older and i feel as there is only 15 people in the world with this syndrome the doctors are at a loss and instead of looking for answers i feel they would rather pass the book than committ themselves for fear of bein wrong as everything i know about my daughter i have had to find out and learn myself. 12 years ago i lost a little girl Charley who was 3yrs9mths old who also had this syndrome.she had a heart defect and hirschsprungs disease both of which were not found till the post mortem. Maria only last night started to complain of tummy ache and her stomach was distended and she brought up some bile.I know my daughter totally and i feel very scared.Charley suffered like you wouldnt believe and i was made out to be an over reactive mother and given lactulose and senna all the while.I was 17 and put my trust in doctors and i do not have that anymore. Can Maria be developing hirschsprungs or any other bowel disorder.is her myopathy having a huge effect.Please help me,with total honesty,i know what ive learnt and i know deep down whats going on.its not rocket science.but nobody will committ and i feel so alone.i know its a rare disorder and they dont have answers in a text book.but i cant see my daughter suffer...not again.
Any input could prove valuable
with thanks
lisa