Living with BRBNS

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My daughter was diagnosed four years ago. After many visits to doctors, we have been lucky to meet a doctor who offered us the first glimpse of the word hemangioma and that we needed to look up for specialized treatment.
During this period, she was suffering from iron deprivation and going thru periodic blood transfusions. At the same time we discovered a big mass in her pelvic area.
After the diagnose, we tried some sclerotherapy, but results did not look promising. What really bothered us, me and her mother, was the blood transfusions and after discussing it with her doctors, it was decided we would give sirolimus a try.
It was life changer and in a few weeks our daughter was able to live a normal life, she gained some weight and recovered her appetite. She started feeling more energetic, got better at school and her humor also changed.
As for the rest, it is still an ongoing thing. We hope there is good news ahead.