Coolblue
I have been communicating with a mother in India that has a 14 y/o daughter with virtually the same condition as yours. She has developed an exercise therapy with a Physiotherapist that has made significant improvements to her daughters condition. The before and after pictures are remarkable. She asked me to reply to your post so that she can share with you her experiences.

You can reach her at narayankpl@gmail.com

Good Luck
Randy