MAPLE HEIGHTS, Ohio — In all ways, 4-year-old J'ior Princeton is a typical little boy who likes bugs, has a little trouble sitting for interviews, and a passion for singing songs from kids' shows.
But what you may not know about this brave little boy, is the mighty fight he has inside.
"He was born three weeks early and at birth he came out a little jaundice," J'ior's mom, Shawn Storms said. "They diagnosed him with biliary atresia."
It's a rare disease of the liver and bile ducts found in infants, and without surgery or a liver transplant, it's often fatal.
Shawna said she was stunned reading about the statistics. Only one and 15,000 are affected by the disease.
"I was like devastated at that point," Shawna said.
Doctors at University Hospitals performed a Kasai procedure to remove the damaged bile ducts outside J'ior's liver and replacing them with a portion of his small intestine. Unfortunately, it didn't last.
"It started failing before the year and they kind of knew that it wasn't working. So they put us on the transplant list," Shawna said.
The waiting game for a liver was terrifying. Then, a breakthrough came when J'ior was just 17 months old: A liver became available.
It was a joyous milestone that came with setbacks.
"It was kind of up and down. So he would be outta the hospital for a month and then he'd go back for like two months and then he'd be out for a couple weeks and then maybe go back for a month," Shawn remembered.
Then, just six months after his transplant, a major scare.
"He had a bowel obstruction from the transplant, the scar tissue had wrapped around his bowels and blocked it off," Shawna said.
Through it all, J'ior kept smiling, and inspiring.
"I'm extremely proud of him. He has been so amazing through this," Shawna said of her son.
Hoping to share encouragement with others going through the same disease, J'ior and his mom wrote a book. It's called "Fight My Journey." It was published in March by Jameel Davis of Cultivating Minds.
Shawna said her friend Kevin McIntyre, who went through his own transplants, encouraged her to write the book before he died.
"He passed away last year, but he kind of inspired me to write the book and he kind of donated some money, you know, towards buying J'ior's t-shirts, because we were selling t-shirts and masks at the time," Shawna said.
The book is an intimate look at what J'ior's been through in his short four years of life.
"All of the pictures in the book are actually his pictures of all of the process of him being in the hospital from the time he was born up until the book was published," Shawna said.
It's not just spreading hope here in Northeast Ohio, J'ior's story has reached folks across the world.
"People have been reaching out to me from other countries. I have a young lady that I speak to often, who lives in California, whose daughter was born with this," Shawna said.
"And she said that when she saw J'ior's page and she went through everything, she then had hope that her daughter would have a first birthday," Shawna told us.
The support from strangers has been overwhelming.
"I think that what it did for me was all of the people that I didn't know that were reaching out to me. They were coming to the hospital, they were donating. They were there by J'ior's side and just willing to be supportive of the movement that I was trying to do for not just J'ior, but for the community and for the nation as a whole for, you know, people who get diagnosed with this disease," Shawna said.
J'ior has support somewhere else, too: Lifebanc. The staff and volunteers celebrate kids like J'ior and others every day. And, they honor the selfless donors who made the decision to give life to someone else through organ donation.
To learn more about Lifebanc and organ donation, click HERE.
For a copy of "Fight My Journey," click HERE.
Editor's Note: The following video is from an unrelated story in November 2021.
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