Tiny Transplant Titans: couple starts nonprofit while 1-year-old awaits new liver

WEYMOUTH, Massachusetts −  When his son was born with a rare liver disease nearly 18 months ago, Stephen Squillante said he assumed he'd be a match to  give part of his liver to Stephen Squillante III.

Instead,  he got the shocking news that he has a type of blood cancer that prohibits him from donating organs. Doctors caught it early, and he said he's feeling great, but the disappointment over not being able to help  his son has been palpable.

"At 33, you don't expect that," he said. "You go in thinking you're nervous to get tests done and hope you're a match, not worried about your own health, so it was shocking. ... Right now, I'm just bummed. I was hoping to give my son part of my liver."

As they wait for other family members to go through the screening process, Squillante and his wife, Shannon, started a nonprofit to help other families on the same journey. Tiny Transplant Titans aims to support children who have received life-saving transplants and those still waiting.

“We’ve had the experience of being in the hospital a few times with him, and that led us to want to help other people,” Shannon told the Patriot Ledger, a member of the USA TODAY Network. “Our support system has been incredible. Family, friends and friends of friends have stepped up, donating to us, getting Stephen Strong shirts, so we wanted to extend that forward and help others in this situation.”

A failed surgery, an excruciating wait

While still in the hospital after his birth, her son was diagnosed with a rare liver condition called biliary atresia, which affects 1 in 15,000 babies. Bile ducts inside and outside the liver in babies with the condition are obstructed or absent, blocking the flow of bile to the intestine. That leads to buildup and scarring in the liver and eventually liver failure and death.

At 5 weeks old, Stephen Squillante III underwent surgery to try and prolong the life of his liver, a Kasai procedure, which connected his small intestine to his liver.

But the surgery was unsuccessful. He has been on the liver-transplant waiting list since November 2022. He's now 17 months old.

While he waits, Stephen is on 11 medicines a day and uses a feeding tube. Awaiting news of a donor, his family wants to make tough situations easier for other families.

Shannon Squillante said their hope is to create care packages. When children are admitted to the transplant floor, families would receive a package with a toy, gift cards, a blanket and some other small things of comfort.

She said they also want to provide anniversary gifts for children after they receive transplants, since it's a huge milestone to get past the first year following an organ transplant.

"Just being in the hospital, we saw all types of situations and we realized how lucky we are with our support system because there are children that don't have the same support," Stephen Squillante said.

He and his wife also hope Tiny Transplant Titans will raise awareness of the importance of organ donation.

Reach Jessica Trufant at jtrufant@patriotledger.com.

This article originally appeared on USA TODAY NETWORK: Family whose son needs organ transplant starts charity to help others