KCTV 5: Family's story of rare liver disease highlights 'significant' need for pediatric organ donations

By Lauren Magarino, Zoe Shriner and Beth Peak

Many families with toddlers know it well - the so-called terrible twos. But for the Sullivan family, witnessing their son Xander thrive as a toddler is nothing but a gift.

We call him a Sour Patch kid because he just– he will be wild, crazy. But then he is the sweetest, loving boy,” mother Trisha Sullivan said.

Xander has celebrated his two-year anniversary of receiving a life-saving liver transplant at 5 months old.

“So, when he was born, everything was fine. He’s a nine-and-a-half-pound fat boy,” Sullivan recounted. “After a week or two, he started turning jaundice yellow, which my oldest was also jaundice, so we didn’t think much of it.”

Check-ups at the doctor’s also suggested Xander’s jaundice was not of major concern. But as time wore on, Sullivan suspected something was wrong.

Doctors diagnosed Xander with Biliary Atresia, a rare pediatric liver disease.

Xander needed a liver transplant, and fast. He joined the more than 100,000 people on the waitlist for an organ transplant in the United States. After two and a half months, Sullivan received “the call,” letting the family know Xander had a potential organ match.

After undergoing a transplant at Children’s Mercy Hospital, Xander started to blossom.

Dr. Ryan Fischer is the chief of hepatology and transplant medicine at Children’s Mercy Hospital. He cared for Xander through his entire transplant journey.

“It is a success story. And at the same time, it’s what we expect for every patient that we take care of,” Dr. Fischer said.

But there’s no success story without organ donation.

“I work in liver, but that could be kidney, heart, lung, intestine, maybe a combination. And so, the need for those organs is significant,” Dr. Fischer said.

See the full story via KCTV 5

The Brendan Tripp Elam Transplant Center at Children's Mercy