Amari's Alagille Syndrome Journey
鈥淚鈥檓 forever grateful to the doctors and nurses that saved my son鈥檚 life.鈥
鈥斅燗mari, Mom
Amari鈥檚 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鈥檚 liver wasn鈥檛 functioning properly, leaving him and delaying his body鈥檚 development. Amari鈥檚 doctor, , has been monitoring Amari鈥檚 journey with Alagille syndrome. When Amari was 3 years old, Dr. Adeyemi noticed an abnormality in his routine blood work and admitted Amari to 91大神 Children鈥檚 Hospital, Delaware.
Ruthie, Amari鈥檚 mother, was told that Amari鈥檚 liver had a tumor that was growing aggressively and rapidly. Diagnosed as hepatocellular carcinoma, an uncommon liver cancer in children, the Transplant Team at 91大神 Children鈥檚 reviewed Amari鈥檚 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 鈥 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! 聽
When asked how Amari is doing now, Ruthie says, 鈥淚t鈥檚 like I鈥檓 seeing my son for the first time.鈥 With his jaundice gone and appetite restored, he has gained healthy weight and is like a 鈥渘ew person鈥 according to Ruthie. Ruthie also shares that her experience with 91大神 Children鈥檚 was 鈥渢ruly a blessing and I鈥檓 forever grateful to the doctors and nurses that saved my son鈥檚 life.鈥
Amari now gets to be a happy and healthy three-year-old thanks to his liver transplant.