While visiting family in New Jersey in September 2019, Ian’s dad, Paul Charles, noticed that a section of Ian’s belly felt hard while getting him ready for bed.
While Ian, then 2, didn’t complain of any pain or show any signs of a fever, “that night I couldn’t sleep very well,” says Dia. “Something told me, ‘Don’t brush this off.’”
Trusting her gut, Dia took Ian to the local emergency room in the morning. There, she says, “I got the worst news of my life.”
Doctors found a malignant tumor covering 75% of Ian’s liver and diagnosed him with hepatoblastoma, a rare type of liver cancer that can affect babies and young children.
Instead of returning home to Charlotte, North Carolina, doctors advised that Ian start chemotherapy immediately. Over five months and five rounds of treatment, Ian’s tumor decreased in size — but it was encasing a major artery, making it nearly impossible to surgically remove the mass.
By November 2019, Ian’s doctors delivered devastating news: Ian needed a liver transplant. The family was referred to NewYork-Presbyterian Morgan Stanley Children’s Hospital.
“It was a tough time. All of us were scared, not knowing what the outcome would be but trying to be strong for Ian,” says Dia. “I was terrified because I know a lot of people can be on transplant lists for months or years.”
More than 12,000 people in the U.S. are waiting for a liver transplant, according to the Organ Procurement and Transplantation Network. Instead of waiting for a deceased donor, Ian’s relatives quickly mobilized to see if any of them could be a match and become a living liver donor for Ian. But their search suddenly came to a halt.
“We learned Ian needed a transplant on a Monday,” recalls Dia. “About two weeks later, we learned there was a donor.”