I have just read your post. I am James mum!
We struggled to find out what was wrong with James as MED is so rare!
His symptoms are short stature, small stubby hands and feet and pain when trying to walk mainly in hips.
We firstly were with Gt Ormond Street and then the Royal Orthopedic Hospital in Stanmore UK.
We then found a great surgeon locally who has just done the first of two hip replacements..
What are your daughters symptoms ?
Would be lovely to hear from you have been so alone on this journey.