Family Whose Son Needs Organ Transplant Starts Charity To Help Others
WEYMOUTH, Mass. — When his son was born with a rare liver disease nearly 18 months ago, Stephen Squillante said he thought he would be able to donate part of his liver to Stephen Squillante III.
Instead, he received the shocking news that he has a type of blood cancer that prohibits him from donating organs. Doctors caught him early and he said he felt fine, but the disappointment of not being able to help his son was palpable.
“At 33, you don’t expect that,” he said. “You go thinking you’re nervous about getting tested and hoping to be compatible, not worried about your own health, so that was shocking. … Right now I’m just disappointed. I was hoping giving my son is part of my liver.”
While waiting for other family members to go through the selection 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 who are still waiting.
“We had the experience of being in the hospital a few times with him, and that made us want to help other people,” Shannon told USA TODAY Network member Patriot Ledger. “Our support system has been amazing. Family, friends and friends of friends stepped up, gave us donations, bought Stephen Strong shirts, so we wanted to extend that and help others in this situation.
A failed operation, an atrocious wait
While still in hospital after birth, her son was diagnosed with a rare liver disease called biliary atresia, which affects 1 in 15,000 babies. The bile ducts inside and out of the liver in babies with the disease are clogged or absent, blocking the flow of bile to the intestine. This leads to buildup and scarring in the liver and eventually liver failure and death.
At 5 weeks, Stephen Squillante III underwent surgery in an attempt to prolong the life of his liver, a Kasai procedure, which connected his small intestine to his liver.
But the operation did not succeed. He has been on the liver transplant waiting list since November 2022. He is now 17 months old.
While he waits, Stephen takes 11 medications a day and uses a feeding tube. Awaiting news of a donor, his family wants to facilitate difficult situations for other families.
Shannon Squillante said their hope is to create care packages. When children are admitted to the transplant floor, families receive a package with a toy, gift cards, a blanket, and a few other little comfort things.
She said they also wanted to give birthday presents to the children after they received a transplant, as it is an important milestone to get through the first year after an organ transplant.
“Just being in the hospital, we saw all kinds of situations and we realized how lucky we are with our support system because there are children who do not have the same support,” said Stephen Squillante.
He and his wife also hope Tiny Transplant Titans will raise awareness of the importance of organ donation.
Contact Jessica Trufant at firstname.lastname@example.org.