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A Forever Connection

Giancarlo dans les bras de son oncle Vito, au parc Jean Drapeau.

Giancarlo has a unique connection with his uncle Vito, and it’s one that goes beyond a simple blood relationship. On October 26, 2023, Vito donated part of his liver to his nephew, diagnosed with biliary atresia. The transplant marked an end to the race against time to save Giancarlo, who had been battling the symptoms of this rare disease since birth. This fall, they will cross the finish line together as they take part in the RBC Race for the Kids benefiting the CHU Sainte-Justine Foundation.

“Our first two children were born perfectly healthy. But we realized that you can never take anything for granted when Giancarlo came along. Fortunately, Sainte-Justine was there for us.”

As they left their family doctor’s office in 2022, Gary and Nancy exchanged a worried glance. Their youngest child, Giancarlo, was still jaundiced several weeks after his birth. Further investigation was done on their doctor’s advice. The results of a liver function test were alarming. Additional testing was requested and the Montreal Children’s Hospital was the first to answer the call.

A diagnosis came soon afterward: Giancarlo had a rare condition known as biliary atresia, which affects one newborn in 17,000. In Quebec, five such diagnoses are made in any given year. He just happened to be one of them.

Giancarlo assoupi dans son lit d’hôpital, avec des tubes aux bras.

Biliary atresia: A race against time

The bile ducts in Giancarlo’s liver were blocked. With no way out, the bile was backing up and rapidly causing damage to his liver cells. Without swift and decisive treatment, children with biliary atresia usually don’t make it past their second birthday. Giancarlo needed surgery within a two-month window to prevent the worst-case scenario from coming true.

He underwent an operation known as the Kasai procedure in an attempt to save this vital organ. At first, they thought it might have worked. But a few months later, it became clear that it hadn’t, and the outlook was grim.

The teams at the Children’s had one last hope: Dr. Fernando Alvarez, a pediatric hepatologist and liver transplant specialist at Sainte-Justine.

Dr. Alvarez and his team will always be a part of our family. Together, they saved our son’s life. We joked with him that he can’t retire until Giancarlo turns 18!
Giancarlo et sa maman Nancy dans la chambre d’hôpital.
Giancarlo, dans sa chaise d’appoint, à l’hôpital.

The long and winding road to transplant

Giancarlo’s family began their marathon the day they checked their son into Sainte-Justine. It started with five long days of testing in preparation for what they hoped would be a green-light for a liver transplant. Every day brought a new round of tests and a new set of professionals to his bedside: from the surgical and pharmacy teams to the intensive care unit where Giancarlo would recover after surgery. A whole village came together to provide their support and get Giancarlo and his family ready for what was to come.

Transplant nurse Stéphanie Dion was an anchor for the family throughout the process and helped everything run smoothly. “She was a guardian angel for our baby boy,” said Nancy. “At one point, when we got a call saying there was a liver for Giancarlo, she supported us every step of the way. When we found out it wasn’t a good fit after all, everybody was crestfallen, including Stéphanie. The team at the clinic was really our second family.”

A second family that, in addition to the much-needed emotional support, brought an unparalleled level of expertise, as the only hospital in the province to perform pediatric liver transplantation.

The reason the teams at Sainte-Justine can treat as many children with digestive and hepatobiliary conditions as they do is because of the generosity of an entire community dedicated to catalyzing advances in maternal and child healthcare. Your commitment has a meaningful and tangible impact on the lives of children like Giancarlo, and your donations have helped Sainte-Justine become a world-respected authority in pediatric medicine.

“I want everyone to know how much Sainte-Justine has done for us,” said Nancy. “Our family owes them everything. This is our hospital.”

I’ve been here for 32 years and I’ve seen how Sainte-Justine has grown. I’ve seen everything that needed to be done to make it possible for Sainte-Justine to reach a level of excellence in liver transplants. Ours is the only hospital in Quebec with specialists in pediatric liver disease. Everything that can affect a patient, from medical aspects right down to their socioeconomic circumstances, is taken into account. We really love what we do. We do it with passion and we give our all to help our patients live a healthy life.

Two families, one goal

While Giancarlo was waiting for a liver, everyone around him was doing everything they could to help. Many of his aunts and uncles stepped up to undergo testing to determine whether they were suitable living organ donors.

“My brother Vito won out,” laughed Nancy. “He really wanted to do this for Giancarlo, and he was the most compatible donor. He was the ideal candidate. We have a close-knit Italian family, and it definitely shows at times like this.”

On October 26, 2023, Vito checked into the Centre hospitalier de l’Université de Montréal, where a portion of his liver was removed and sent to Sainte-Justine. After a subsequent 15-hour operation, Giancarlo had a new lease on life. And none of it would be possible without the one-of-a-kind expertise that makes Sainte-Justine as special as it is.

It only made sense. I didn’t think twice about doing this for my nephew. No child should have to live with something like this. That’s the way things are in our family. And it was very reassuring to be able to lean on all the expertise that was around us to cope with the risks involved.

“The connection between them isn’t something you can see with your eyes, but you can feel it in your heart,” said Nancy. “My son doesn’t understand how huge a thing this is yet, but deep down he knows that he received the best gift of all: the gift of a healthy life.”

RBC Race for the Kids: Lace up for Sainte-Justine!

Giancarlo’s family now feels compelled to give back to other families at Sainte-Justine, which is why they will serving as the ambassadors for the RBC Race for the Kids on October 5, at Parc Jean-Drapeau.

“We wanted to do it last year, but with Giancarlo about to undergo surgery, we couldn’t make it happen. This year, we will be crossing the finish line with all of you. Thank you for helping Sainte-Justine grow beyond its wildest dreams!”

Run or walk 1 km or 5 km and enjoy a full range of family-friendly fun while you’re there! Giancarlo and his family extend a heartfelt invitation to you to go the extra mile and get people you know to give from the heart. This year’s goal is to raise $600,000 to support the health of children and mothers-to-be across Quebec.  

Together, let’s all lace up for Sainte-Justine! 

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