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

WEYMOUTH − After his son was born with a rare liver disease in October 2021, Stephen Squillante said he assumed he'd be a match to be an organ donor and give part of his liver to Stephen Squillante III.

But instead, Squillante got the shocking news that he has a type of blood cancer that eliminates him from donating organs. Doctors caught it early, and he said he's feeling great, but the disappointment over not being a match for 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 the family waits for other family members to go through the screening process to donate, Squillante and his wife, Shannon, recently 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 said. “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.”

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While still in the hospital after his birth, Stephen Squillante III was diagnosed with a rare liver disease called biliary atresia, which affects 1 in 15,000 babies. At 5 weeks old, he underwent surgery, a Kasai procedure, which connected his small intestine to his liver. The surgery was unsuccessful, and he has been on the liver transplant waiting list since November 2022. He's now 17 months old.

While he is home awaiting a transplant, 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, since it's a huge milestone to get past the first year following an organ transplant.

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Stephen Squillante said, "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."

They also hope to raise awareness of the importance of organ donation.

To learn more about Tiny Transplant Titans, visit tinytransplanttitans.com.

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Reach Jessica Trufant at jtrufant@patriotledger.com.

This article originally appeared on The Patriot Ledger: Weymouth's Squillante family starts Tiny Transplant Titans nonprofit