Help for Little Miss Storm

I don't know where to begin. About a year ago little Miss Storm was diagnosed with Polyostitic Fibrous Dysplasia, McCune Albright Syndrome. It took 7 doctors to figure out she had this very rare disease. She has tumors in her bones that spontaneously break her bones. As of right now we know it's effecting her from the waist down. When she turns 5 we get a full body scan to see if the disease is anywhere else, im praying and praying it's not !!! This little princess can't be a child, no running, no jumping, no playing around, no parks, she can't walk more than a blocks lenght. Since diagnosis we have had 3 breaks all in her femur causing her to be in Spica cast covering most of her body. Now a new symptom Percousis Puberty, she's 3 years old going thru puberty !!! Doctors say as the disease progresses she may be confined to a wheelchair and will have no children, she will have bone deformities. Also as he bones begin to break the only thing they can do is go in and cement them and rod them. We are expecting large medical bills. Our first mri cost over 11,000$. Anything raised will go into an account for just Storms medical bills and her home schooling. Thank you for reading and any prayers or blessings you can send !!!