My daughter, Alexandra (Ali), was born in Kearney, Nebraska in September of 1991. At the age of 2 weeks she was diagnosed with Alpha 1 Antitripsin Deficiency. The doctors told us that she may someday need a liver transplant because it seemed, in her case the Alpha 1 was affecting her liver. She remained healthy and continued to grow and thrive. The doctor put her on a special formula and she was given extra vitamins. They continued to monitor her liver function numbers with monthly blood work. When she had her regular check up at 4 months of age, the doctor became somewhat concerned because her liver function numbers were going up, a sign that something was going on with her liver. She sent us to Omaha to meet with a pediatric liver specialist. He wanted to do a biopsy, but just by feeling her stomach and the area where her liver was, he decided that we should skip the biopsy and have her evaluated right away for a liver transplant.  This was quite a shock to my husband and me. We thought she had been doing very well. 

We took her to the University of Nebraska Medical Center for an evaluation. After 2 days of testing, the doctors decided she did indeed need a liver transplant. So at the age of 5 months, Ali was placed on the transplant waiting list. The doctors at the Medical Center told us the average wait for a pediatric liver was 4-6 months. We were totally shocked when 8 weeks after she was placed on the list (April 1992), we got the call saying they had a liver for her. When Ali came out of surgery after 7 hours the first thing we noticed was how pink her skin was. No more jaundice. We knew this new liver was working like it should. She did very well, spending only 10 days in the hospital and setting a pediatric record for shortest stay in the hospital after a pediatric liver transplant. 

She had a few “bumps in the road” early on. She was hospitalized for 17 days in May and June of 1992. She had a couple 2 day hospital stays at the ages of 2 yrs. and 4 yrs. for fevers of unknown cause. She has gone from having daily lab work done to weekly labs to once every 3 month lab work. When she came home from the hospital after her transplant she was on about 7 medications and now she only takes Prograf – her anti-rejection medication.  

We moved to Lawrence, KS in October 1997 and things have continued to be great. We go back to the Medical Center in Omaha every summer for her yearly checkup and for a reunion with her transplant buddies. In 2004, Ali participated in the US Transplant Games as a member of Team MO-KAN, bringing home a gold medal in table tennis, a silver medal in bowling and a bronze medal in volleyball. She looks forward to participating in the 2006 Transplant Games in Kentucky. Ali is now a happy, healthy teenager enjoying the second chance at life she was given as an infant. She lives life to its fullest and is active in helping to promote organ and tissue donation. We are so thankful for her donor family who made the decision to donate their baby’s organs and give Ali the gift of life.