Every operation Mathis undergoes is another step forward toward his freedom. From birth to adulthood, he will be in for surgery more than 25 times. But he will make it to the finish line, with courage and perseverance.
Thirty-two weeks into their pregnancy, Katleen and Daniel received alarming news about the baby they were getting ready to bring into the world. A shadow of doubt was cast on what had been an otherwise uneventful journey.
The experts in fetal cardiology at Sainte-Justine had detected two anomalies in little Mathis’ heart: two septal defects, one atrial, one ventricular. Thus began his journey into the world of cardiology. Dr. Joaquim Miro would manage to address both defects by catheterization when he was about 18 months old. He may still need another operation before he turns 18 to treat the total anomalous pulmonary venous return, a related congenital heart defect that affects his lungs. But the prospect is less of a concern now, after all the wonderful care he has received since his birth.
Dr. Marie-Joelle Doré-Bergeron has been keeping a close eye on Mathis from day one. She is incredible, making herself available to us whenever we need her. She’s the one who picked up on a number of defects, including Mathis’ scoliosis, when he was around six months old.
After a series of tests, Dr. Jean-Marc Mac-Thiong, an orthopedic surgeon at Sainte-Justine, confirmed that Mathis had a severe case of scoliosis. He was only six months old and already there was a 35-degree curve in his spine, which would only increase in the years to come. And sure enough, by age two, his scoliosis had exceeded the 50-degree mark, to the extent that the healthy development of his internal organs was jeopardized.
Mathis was fitted with plaster casts to prevent the condition from progressing further. An opening in the cast allowed his abdomen to rise and fall as he breathed. Each cast was left on for three months before it had to be changed to adapt to his growing body. With every new fitting, Mathis had to be put under and in traction to ensure his body was in an optimal position. He underwent the same process close to a dozen times by the time he was eight years old.
For a little boy who loves sports so much, what he went through was hard on him. He had to avoid any kind of bumps or bruises. At least in the summer, they switched him over to a fibreglass brace so he could go swimming and enjoy just being a kid.
Despite the orthopedic surgery unit’s efforts and Mathis’ determination, the scoliosis kept getting worse. The curvature was over 80 degrees by the time he was eight years old. His breathing was affected as a result. So Dr. Mac-Thiong performed another surgery to put in growing rods. They were extended every six months to accommodate the changes in his body.
Like a runner, Mathis stayed focused on the finish line. With every operation, he was getting one step closer to being free. The teams at Sainte-Justine were there to support him and his family. They had been there, right by their side, from the day he was born, helping them deal with each ordeal and supporting his physical and mental health. At around age 15 or 16, Mathis will go into the OR one last time to have his vertebrae fused and fix his curvature for once and for all.
Mathis dreams of taking part in competitive sports. As he waits for his dream to come true, while his orthopedic treatment does its job, Mathis will be there for the RBC Race for the Kids, along with his family.
Despite everything that he has been through, Mathis has kept an incredibly positive outlook. He is undaunted and unstoppable. He has taught us so many heartwarming life lessons and been an inspiration to everyone around him. For everything that Saint-Justine has done for him, we wanted to give back something ourselves.
KATLEEN AND DANIEL
RBC Race for the Kids
Prompted by their experience with Sainte-Justine, Mathis’ family wanted to give back to the hospital that has given him such amazing care. In his role as ambassador for the RBC Race for the Kids, Mathis invites you to take part in this family-friendly fun run on October 22. He will be joining other family members and friends in lacing up for Sainte-Justine, along with hundreds of other runners who are up for the challenge, at Maisonneuve Park in Montreal.
Come walk or run the 1 km or 5 km route, and enjoy the wide range of activities on site that your whole family is sure to enjoy. And while you’re at it, why not take part in the fundraising challenge associated with the event to help us raise $500,000 for Sainte-Justine?
Join me in doing something special for Sainte-Justine! Together, we can make a difference for families with a sick child.
Together, let’s lace up for Sainte-Justine!