My Two Year Old Son Has Brbn

 I'm a mom of a two year old boy from philippines who has this kind of rare disorder, he was diagnosed when he was just 10 mos. old, it was a heartbreaking moment , it was his first time he went through blood transfusion, from then on, his hemoglobin kept on going down wherein he needed to be blood transfused everytime, just recently he was put in ICU, his hemoglobin really went down, he has blue nevi his arms, head, hands,palms,leg and a big one on his right foot,  it bleeds whenever it hits, till now we still don't know what to expect, where to get help, here in our country, the specialization is not yet available, since its a rare, and most of the doctors never encountered this, they're trying to help to get assistance from outside as they say but we don't know when, i'm praying some kind of miracle will come along, some of those growing blue nevi will be removed , years from now he will be going to school, hoping he could live a normal life like playing as other kids...as a mom its a heartbreaking to see him on that condition...