Bryan’s battle with atypical HUS begins right after his four month well check up.  Prior to that point he was a healthy, happy baby.  In two and a half months at Children’s Healthcare of Atlanta at Scottish Rite Bryan went from regular care to acute care to Pediatric ICU, from blood transfusion to plasma pheresis to CVVH dialysis, and nothing was working.  His kidney function regressed to approximately 10-15% of its normal function, when we decided to try a new experimental non FDA approved drug called Soliris.

            Within forty-eight hours of the first dose of Soliris, we were already seeing amazing results.  His kidney function is currently “normal”!  He has ongoing blood pressure issues, and is on a barrage of meds to keep his electrolytes and blood pressure concerns in check.  Also, he has to go into the transplant clinic at the Children’s Healthcare of Atlanta at Egleston once every 3 weeks to receive his Soliris IV infusion.  However, he is at home and a fully functioning healthy happy baby once again!

            There is not enough research yet on this disease or this drug that is currently working its magic on Bryan.  He is the youngest ever to try this drug, and no one knows how long you have to stay on the drug to prevent a future relapse.  For now, we are continuing the infusions of Soliris and enjoying our sweet active baby!