A Journey of Strength and Hope, Joris and Maria’s story

Joris is a thriving seven-and-a-half-year-old boy who has been on a journey requiring strength and hope from himself, and all those around him. At just four weeks old, Joris began exhibiting unusual symptoms; vomiting, changes in his eating habits and he had very pale poo. Concerned, his mother, Maria, took him to a pediatric doctor. Unable to pinpoint the issue, they were referred to a liver specialist hospital. A blood test revealed irregular liver values, prompting an urgent stay for further diagnosis.

Doctors suspected biliary atresia. This is a rare liver disease affecting infants that causes a blockage in the bile ducts in the liver. Symptoms include jaundice, hardened liver, swollen abdomen, pale stools and dark urine, which persist beyond the first two weeks of life¹.

A small exploratory surgery was performed, and while Joris’ liver appeared healthy, concerns remained.

“I felt quite anxious and didn’t really know what was happening. That was quite challenging as a mother.”

At three months old, Joris was officially diagnosed following a crucial test, which confirmed biliary atresia. At this age his doctors advised he was too old for Kasai surgery, which re-routes bile away from the liver. His only chance of survival was a liver transplant.

Maria and her husband explored the possibility of becoming living donors themselves and testing confirmed Maria as a match.

When Joris’ condition deteriorated, they made the difficult but necessary decision to proceed with the transplant. On December 4th, the surgery took place successfully. Challenges followed—his gallbladder was removed, and his bile ducts adjusted, leading to post-surgical complications. Drainage tubes supported his recovery for a year, but ultimately, he healed.

His scars are a testament to his resilience, unnoticed by him as he embraces life with enthusiasm. He excels in school, enjoys swimming, and has recently discovered a passion for baseball. His journey, marked by uncertainty and perseverance, has shaped him into a strong and determined child.

Maria reflects on their experience with gratitude for medical advancements, family support, and the ability to be informed. Through research, she gained understanding—knowledge that lessened the shock and enabled her to make informed decisions with confidence.

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