Russian specialists as a whole are probably much more experienced with the management of this problem than their western counterparts. In general, if all else is well with a child, I don't become very excited about finding this diagnosis in the past history. Some follow up blood work is necessary to confirm cure, but prognosis is good. This bond will deepen upon seeing a photograph or a video, and this will occur whether the material is of good or poor quality from the standpoint of a medical professional. From the standpoint of a young child, this may be for the best.
Videos are an important source of information.
Parents must balance their own knowledge of themselves and their own common sense against the understandably guarded opinions of their medical advisors. My advice is not to decline a referral on the basis of one video and one medical review. If all initial information appears worrisome to you, ask for review of child in one to two months and more information. Serious requests of this nature are understandable and acceptable by all reputable agencies.