Hi,

Why don’t you contact the doctor you are interested in using here in the U.S. and ask if there is anything they can do to help. Also, you may want to contact your insurance company and explain that this is a rare condition and only this doctor ( the one you want) is the one that can do the surgery and hopefully avoid other terrible complications that would end up costing the insurance company more money in the long run.  Maybe the doctor can even help with that process.  I guess you can also find out how much the surgery will cost and then start saving up your money.  Bypass the inurance company altogether.  When there is a will there is a way. It sounds to me like you will eventually get what you want for your daughter. Don’t give up.

Sandra