Amari's Alagille Syndrome Journey
“I’m forever grateful to the doctors and nurses that saved my son’s life.”
— Amari, Mom
Amari’s Story
How a Rare Disorder Led to a Healthy New Life
Amari had been in and out of hospitals for testing and blood work since he was 5 months old. Diagnosed with a rare genetic disorder called Alagille syndrome, Amari’s liver wasn’t functioning properly, leaving him jaundiced and delaying his body’s development. Amari’s doctor, Dr. Adebowale Adeyemi, has been monitoring Amari’s journey with Alagille syndrome. When Amari was 3 years old, Dr. Adeyemi noticed an abnormality in his routine blood work and admitted Amari to Nemours Children’s Hospital, Delaware.
Ruthie, Amari’s mother, was told that Amari’s liver had a tumor that was growing aggressively and rapidly. Diagnosed as hepatocellular carcinoma, an uncommon liver cancer in children, the Transplant Team at Nemours Children’s reviewed Amari’s case and decided a liver transplant would be his best treatment option. As a single mom, Ruthie reached out to her family, friends and community for prayers and support as Amari was moved up on the waiting list for a new liver.
The Miracle of a Liver Transplant
After several weeks, the team called Ruthie to discuss an operation to treat the tumor growth as they waited for an organ for Amari. Ruthie was hesitant, but she agreed to the procedure knowing that it could buy Amari time. But the very next morning, Ruthie and Amari got the call – there was a liver that was a match for Amari! Amari received his new liver on November 20, 2021, and the surgery went perfectly. Within a few days, Amari was feeling better and full of energy!
When asked how Amari is doing now, Ruthie says, “It’s like I’m seeing my son for the first time.” With his jaundice gone and appetite restored, he has gained healthy weight and is like a “new person” according to Ruthie. Ruthie also shares that her experience with Nemours Children’s was “truly a blessing and I’m forever grateful to the doctors and nurses that saved my son’s life.”
Amari now gets to be a happy and healthy three-year-old thanks to his liver transplant.