In January 2013 at the age of 8, Ethan came home from school one morning after throwing up. Just a short 48 hours later we were in the ER of Primary Children’s Hospital in Salt Lake City, UT where he was found to be in total kidney failure. He was dehydrated, jaundice, lethargic and had urine the color of Coke. He was immediately started on daily dialysis, blood and platelet transfusions. We had no idea what was happening and were terrified. After 2 weeks he was diagnosed with Atypical HUS, a disregulation of the complement system causing severe damage to his kidneys and other vital organs by throwing clots. His body was attacking itself with this ultra rare chronic life threatening disease.
He was able to start on a recently FDA-approved drug called Soliris. At almost $450K a year it is the world’s second most expensive medicine. It was the miracle we had begged and prayed for and worth every penny. After the first dose we saw immediate improvement and were able to take him off dialysis soon after.
Thirty days later we were able to leave the hospital and take our sweet boy home with us.
Ethan maintains a heavy drug regiment at home including two blood pressure meds and an immunosuppressant. He goes to PCH every other week for an IV infusion of Soliris. He tires easily but thanks to this medicine, he is able to live a ‘normal’ life- just extra cautious of germs! He has always maintained a positive attitude and rarely complains. In fact he has mentioned multiple times he is glad he got it instead of his little sisters. Now aged 10, he dreams of becoming a Nobel Prize winning geneticist and curing his disease and other rare diseases!