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In April of 2016, Kristy was on a business trip in China when her husband, Jason, called to let her know that their son Will was sick. He had taken Will, then 12 years old, to Children’s Hospital of Wisconsin’s Emergency Department because of swelling in his stomach and legs.
It was discovered that Will had cirrhosis — a complication of liver disease that involves loss of liver cells and irreversible scarring of the liver. After a battery of tests, blood work and a liver biopsy, results indicated that Will had a rare genetic disorder called Wilson’s disease.
Will became increasingly ill over the next several days. His situation worsened to the point where he didn’t know his own name or how to use a toothbrush.
He was in liver failure and his parents were advised that he would need a liver transplant within the week to survive. He was listed as 1A on the transplant list — the highest level. He had gone from a seemingly healthy child to critically ill in just a few weeks.
On the fifth day Will was on the transplant list, a donor organ was found. Will had a successful transplant, but he was not out of the woods. Liver transplants require large incisions and a lot of time to heal properly.
In the months that followed, Will had a number of complications. A month after his transplant, his body rejected the new liver and he was put back on the transplant list for another possible donor organ.
However, over the next several months Will’s health began to improve and he would not need another transplant. To continue his recovery, he had to relearn how to stand, walk and talk. He had extensive physical and occupational therapy to regain the strength he had lost while in the intensive care unit for so long.
After nearly three months, Will was able to go home.
You can help kids like Will once they go home
Nearly 2,000 children underwent organ transplant in the United States last year, and many of these children are readmitted to the hospital because of the complexity of care that’s required once the child returns home.
Our researchers are working to develop an app for mobile devices that would make it easier to care for kids like Will once they return home from the hospital. This app would improve communications between the family and the medical team, give the family the knowledge they need to care for their child at home and improve the family and patient’s quality of life.
Children’s has made it a priority to invest significantly in research and innovation to help improve the lives of children, but we can’t do this work alone. Our researchers depend on donor support to keep their labs running and life-saving clinical trials going.
Help us continue to help kids just like Will by donating today.