Weymouth family awaiting liver transplant for baby boy finds solace in helping others
WEYMOUTH - From the moment that Shannon and Stephen Squillante fell in love with their baby boy, it's come hand in hand with a lot of fear. Sweet Steve was born with biliary atresia, a rare liver disease which required his first surgery at just five weeks old.
"They do that procedure to make the native liver last as long as possible. Unfortunately, his didn't take as well as they would have hoped. Now he is in need of a liver transplant," mom Shannon explained.
"The sad part was I thought I was always going to be a match for him, same blood type. I felt like I was healthy. Didn't foresee anything wrong," dad Stephen recalled.
But while trying to save his son, the baby may have saved him. Donor testing caught a blood cancer early.
"Having cancer [myself], he wouldn't be able to take a piece of my liver, which is unfortunate because we were kind of banking on that being the option," Stephen said.
Whenever that phone call comes for a perfect match liver - it's a race for a miracle. The family's bags have been packed for five months - and most importantly little Steve has to be healthy. That means much of their day to day still feels how it did in quarantine during the height of the pandemic - at home and away from germs.
"It's tough for him. He's a baby. He wants to see people and see his grandparents. He's stuck in the house," Stephen said.
The 17-month-old needs a feeding tube, and 11 medications every day. Somehow the parents still think of others. They've created "Tiny Transplant Titans" which provides care packages to pediatric transplant patients and their families.
"If it's something they forgot like a phone charger or pens and water bottles. Small things, gift cards for food. Just something that will help them out in that moment," Shannon explained.
"We've seen the saddest of the sad while we've been at Children's Hospital. We've also seen some great stuff. Being close and having a great family and great friends has really helped us. We just want to be able to help others in a similar situation," Stephen added.
To donate to the organization's care package efforts, or to register to become an organ donor visit www.tinytransplanttitans.com.
April is Donate Life Month, when the family will make their first delivery of care packages to the transplant floor.