Jesse's Story

In 1986, Jesse was born 3 months early and weighed 3 pounds. He immediately needed some red blood cells to help his tiny body survive. With great medical care Jesse had an uneventful prematurity course. But he stopped growing at 9 months, and it took another 9 months and many tests to determine his problem. Jesse has a rare liver disorder called Glucogen Storage Disease Type 1a. It put him at constant risk for low blood sugars. His treatment required a special diet that included taking uncooked cornstarch with water every 3 - 4 hours around the clock. A rare complication of this liver disease is the development of fatty tumors in the liver. Jesse's first tumor was detected when he was 6 years old, and the tumors slowly multiplied and grew so that when he was 16 he had 21 tumors, some the size of a softball. These were pressing on major blood vessels and risked cutting off vital circulation to his lower body. So on April 1, 2003 Jesse was listed for a liver transplant. It was a long wait until December 2, 2003 when we got the call that a liver had been found for Jesse. The donor was a 12 year old girl who died unexpectedly from a cerebral hemorrhage. The surgery also required many units of blood products. Our family is so thankful to those who donated in order to make the surgery possible. Jesse quickly recovered from the surgery, his body seems to have accepted the liver, and he was able to graduate with his Senior class in June 2004. After so many years of living by the clock in order to prevent low blood sugars, it is hard to relax and accept the good health that Jesse is experiencing. It is strange that our concerns now focus on helping Jesse adjust to college life, instead of focusing on his health. The liver transplant has given Jesse a new life and we thank all those who made it possible.

- Jesse's mother, Sarah Narkewicz