SMA Syndrome

My 16 year old daughter was just diagnosed with SMA Syndrome today with the possibility of Nutcracker Syndrome which involves the renal vein with similar causes.  It has been a long year for my daughter with abd pain, nausea, and loss of weight (0.40% in weight for her age).  She has been accused of being Anorexic which my daughter took very personally.  We saw several physicians without answers until today.  My frustration has been very high especially being a physician without answers for a daughter who has suffered so much.  I have read a lot of the discussions and was amazed at how many had the same problems as my daughter.  We live in Cleveland  We just started the process at the Cleveland Clinic.  I am willing to go any where if someone knows a specialist in this area of medicine especially if she needs surgery to correct the problem.  It seems like this is a common request among the discussions.  I saw one person state that there was a specialist at the Mayo Clinic in Arizona.  Does any one know the name?  Or any other names?
Thanks in advance!!