ATTICA, N.Y. (WKBW) — J'Mari Hicks is a typical two-year-old who loves to run, play and watch Mickey Mouse — but unlike his peers, J'Mari needs a living liver donation.
Last year, J'Mari was diagnosed with Alagille Syndrome, a rare condition that affects the liver and other organs. He has recently been approved for a liver transplant, and his name has been placed on a waiting list.
J'Mari does not qualify for a deceased organ donor. As a result, his mother has turned to social media to ask the public for a living donation.
Theresa Vonwrycza, his mother, explained how she often feels alone during this process.
"Pretty much you're on your own," Vonwrycza said. "You have to do the bulk of the work to find the living donor."
This condition takes a toll on J'Mari — who suffers from jaundice, itching and other obstacles.
"He itches about 22 hours of the day," Vonwrycza said. "Last night, he was itching so bad. He couldn't stay asleep. He was just tossing and turning all night."
Alagille Syndrome is genetic. In other words, when J'Mari was diagnosed, so was his mother.
"I've lived my whole life not knowing I had this disease," Vonwrycza said.
While J'Mari's case is much more severe than his mother's, Vonwrycza is unable to donate her liver to her son because she carries the gene.
According to the National Institutes of Health, children who have one parent with Alagille Syndrome have a 50-percent chance of having the gene. However, a child with the condition does not need a parent with Alagille Syndrome to be born with it.
"I really suggest everybody take the time to go get a genetic test because you never know what you're carrying or what you're going to pass on to your children," Vonwrycza said.
She has taken to various social media platforms with hopes of finding a donor for her son. In the process of reaching out, she has been able to connect with people online who are also experiencing Alagille Syndrome.
"A lot of people don't understand," Vonwrycza said. "Just having a bunch of people firsthand know what you're going through is very, very helpful."
J'Mari is currently waiting for his donor, with his mother urging anyone who is considering, to try to donate.
“Please register to be an organ donor because there are a lot of children like J’Mari. A lot. And they all need help,” Vonwrycza said.
Click here to visit the liver donation page, where you can make your "donation to specific individual" for J'Mari Hicks.
