A heart for giving back

When Sean Knox says he plans to make every day count, he means turning gratitude into action for families like his.

“I was told as a kid that my time is limited,” says Sean. “What do I do with this gift? For me, the best part of life has been giving back.”

Before Sean was born in July 1998, an ultrasound showed he would have a heart condition. What his family didn’t know was that he would face complications from not one, but six congenital heart defects.

“I was born with hypoplastic right ventricle, coarctation of the aorta, transposition of the great arteries, atrial septal defect, ventricular septal defect and double inlet left ventricle,” says Sean. “Basically, my heart was a big mess.”

When Sean entered the world, his parents had just minutes to hold him before he needed specialized care in the Pediatric Intensive Care Unit (PICU) at HSC Children’s Hospital. Twelve hours later, he was on an emergency medivac flight to Edmonton for the first of three open-heart surgeries.

“When I was in recovery, my parents looked at my small body in that big hospital bed and thought there was no way I would make it,” says Sean. “They put treats at the end of my bed for the staff, along with a sign asking them to pray.”

Their prayers were answered, and Sean began to recover, finally meeting his older sister, Paige, when he was two weeks old. But his medical journey was only just beginning.

Sean’s second heart procedure happened at six months old, followed by another when he was three years old. After that, his condition remained stable, but he continued to rely on HSC Children’s for ongoing monitoring through the Heart Centre, along with treatment for many broken bones, including 25 castings.

At age 14, Sean also spent a year in and out of hospital working with specially trained physical therapists because he was dealing with complex regional pain syndrome in his right leg, a condition where the nervous system sends abnormal pain signals to the brain, making sensations extremely intense.

“It took me months to learn how to walk again,” says Sean. “I couldn’t put a blanket on my leg for about five months. Even a cotton ball dropped on my leg would cause bruising and excruciating pain.”

Despite facing many health challenges, Sean was able to play soccer, spend time at his family cabin, attend Circle of Hearts Youth Camp for kids with heart conditions, and enjoy an active childhood. He also has many positive memories from HSC Children’s.

“The team there was always amazing and, for me, going to the hospital felt normal,” says Sean.

In 2025, Sean’s appreciation for the hospital team inspired him to apply for a job at Children’s Hospital Foundation of Manitoba. That year he became the Foundation’s Children’s Miracle Network (CMN) and Corporate Partnerships Coordinator, helping partners make an impact through their fundraising.

“To say my job is cool would be an understatement,” says Sean. “It’s the best, being able to see and share where donations go and how they help.”

One of Sean’s favourite places to share with partners is the state-of-the-art Travis Price Children’s Heart Centre, which opened in 2021 thanks to donor support. The centre features leading-edge technology, warm and welcoming spaces, child-friendly design elements, and private rooms for important conversations.

While the space and equipment are new, many of the cardiac staff there remember caring for Sean as a child. He loves seeing how far pediatric care has come.

“It’s amazing to come full circle and now work alongside the people who saved my life,” says Sean.

Sean also believes deeply in supporting research. He’s participating in a clinical study and serves on an advisory committee with the Children’s Hospital Research Institute of Manitoba that aims to address gaps as patients transition from pediatric services to adulthood.

“When I was born, I had about a 20 per cent chance of surviving,” says Sean. “Now, kids who have the same procedures I did have about an 85 per cent chance of making it. That’s the power of research.”

Beyond giving back, Sean finds meaning in travel, outdoor adventures and time spent with loved ones, including his lovely wife, Caitlin.

“Most people like me don’t get to experience adulthood. Without Children’s Hospital, I wouldn’t be here. So, sharing my story is an honour, and every day I have is a gift.”