Meet Ivan!

My name is Ivan Fernandez. I’m a twenty-year-old Mexican male, and this is my story.
When I was born, the doctors told my parents I had biliary atresia and wasn’t going to make it, but my stubborn father wouldn’t buy it. He started to read about liver disease to find out what was wrong with me. He eventually got a lead, and we went to Chicago to confirm the diagnosis. It turned out I had Alagille Syndrome, and after that my parents joined the ALGSA.
My childhood memories differ from those of my friends in that they include taking vitamin supplements, choleretics, and nutrition shakes. Among other things, I had jaundice, butterfly vertebrae, xanthomas, and growth retardation, but was an otherwise normal, happy child. However, the trouble began when my liver stopped working at age thirteen. My family decided that the only option was for me to undergo a liver transplant, and after two months’ wait we got the call: there was a donor.
I was in the ICU for about two months: recovering, receiving physical therapy to regain strength for the muscles in my hands and legs, which had atrophied while I was sedated. When I was discharged from the hospital, I weighed only 45 pounds, and I practically had to relearn how to walk and keep my balance.
It’s now been seven years from my operation, and I must say that everything’s turned out okay. I’m a medical student, a member of a community service program, and I’m taking an extra course on human rights. I also love reading all kinds of books, writing poetry and fiction, and singing.
You could say I’m a healthy, happy, typical young adult with a not-so-typical backstory, but I feel proud when telling it to people. After all, I’m a warrior.

Ivan's ALGS Story


“Mobilizing resources, facilitating connections, promoting unity, and advocating for a cure to inspire, empower, and enrich the lives of people affected by Alagille Syndrome.”