Patient Story: Lucy

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Lucy was born completely healthy, but at 5 months old went to the ER for dehydration during what seemed like a normal cold virus. Within 12hrs it was clear her body was shutting down, beginning with the Kidneys functioning at only 15%. After Dialysis and platelet transfusions, we finally received the diagnosis of aHUS. The team Lucy had at the hospital were all amazing (from being so kind, to a nurse driving an hour to the hospital immediately after getting home from vacation to get an IV in a very swollen baby girl) and incredibly fast at diagnosing this rare disease that we had never heard of before this event. Lucy responded fairly quickly after her first infusion of Solaris and we started to see our happy little girl shortly after that. She continued to struggle with and be treated for elevated blood pressure for a couple years, but has now made a full recovery. Lucy has a chest port and continues to receive infusions, eventually having switched to Ultomiris and she continues to develop into a healthy (and spunky) little girl.