The goodbye wave to his doctor in the “Maladie d’amour” video is a scene young Thomas has experienced several times. In his four short years, he has had five operations. Thomas was born with a condition known as “cat eye syndrome,” hence the nickname “Catman.”
A second trimester checkup brought Amélie and Stéphane to Sainte-Justine for the first time. The doctors suspected the baby Amélie was carrying had biliary atresia. The rest of the pregnancy nevertheless proceeded normally, with no hint of what awaited them when came time for the delivery.
That’s when everything went awry. Thomas was born on November 15, 2014, in respiratory distress. His blood oxygen level was dangerously low at 80%. Not only did he have a heart defect known as total anomalous pulmonary venous return, but he was missing an ear, he had no anal opening and, as had been spotted in the prenatal ultrasound, his bile ducts had not developed properly. It was a harsh beginning to life to say the least. The doctors were unsure whether or not he would make it.
He was operated on the day after he was born to repair his heart and bowels. After that, the surgeon talked to us about the multiple procedures Thomas would have to undergo to enjoy a normal life. Because I was a runner, I compared what my son would have to endure to a marathon
Their lives were turned upside down. But Stéphane and Amélie were strong and ready to roll with the punches. They drew inspiration from their infant son. His first stay at Sainte-Justine lasted 42 days – the same number as there are kilometres in a marathon. Even then, his parents were thinking of ways to raise funds to give back to the caring, committed team of professionals who kept watch over their bundle of joy. He was still in the hospital when the idea to hold a benefit marathon known as the “Marathon de Thomas“ materialized.
Every day, his strength and his spirit took us by surprise. He’s a fighter, but he’s always so chipper about it! He taught us so many life lessons during that first year. We learned to keep looking at the bright side and to take advantage of every moment.
Stéphane and Amélie
The Légers have been unfailing in their dedication to the cause ever since, undaunted by Thomas’s many health woes, their hectic lives and the arrival of his little sister, Juliette. As a family, they have dedicated themselves heart and soul to a select number of causes that are important to them, including Sainte-Justine, raising over $8,000 to date.
In 2016, we put together a surgery team for the Scotiabank Charity Challenge. As a long-time runner, I coached Dr. Piché, my son’s surgeon, as he trained to run his first 10K. What an experience that was!
Born a superhero
Thomas is special. One of the reasons for this is his rare genetic condition: only one in 75,000 babies is born with partial tetrasomy of chromosome 22 (known colloquially as cat eye syndrome). But more than that, he is a special human being through and through. He is an old soul with a remarkable amount of sensitivity: a single piece of music can move him to tears. And he connects with other people in a disarmingly profound and touching way.
His “Catman” alter ego has a specially designed cape and logo (which his dad has tattooed on his arm), symbolizing Thomas’s superhero-like resilience. He can’t fly. He can’t shoot webs from his wrist. He can’t transform into anything else. But his superpower is greater still: he can turn the love of the people around him into the strength to overcome the multiple challenges life has laid at his feet – and inspire others to do the same!
“When things get tough, that’s when you have to try even harder, right, Daddy?” Thomas never stops surprising us, with what he says and what he does. Last spring, after a three-week stay at the hospital, he was so weak, he couldn’t even walk. But a few short weeks afterward, he finished the Scotiabank Charity Challenge without a word of complaint or the merest suggestion of wanting to give up.
In the “Maladie d’amour” video, we see Thomas leaving Sainte-Justine and waving at Dr. Saint-Vil. But a part of him will always remain at Sainte-Justine. This is where his parents found the care and support they needed. It’s where they forged ties with a number of professionals – ties that go beyond the hospital walls. And it’s where their son was given a new lease on life.