Wyatt isn’t an ordinary little boy. He was born with several severe congenital heart defects and has been fighting for his life ever since.

Wyatt has spent 20 of his 23 months at the Hospital for Sick Children in Toronto.

In this time, he has had an unimaginable five open heart surgeries, three cardiac catheterizations, and a tracheotomy. He was only 20 days old when he had his first open heart surgery.

“He is an amazingly strong and brave little boy who has a smile that would light up any room, and has taught us more about life, love and strength than anyone else I have ever met in my life,” says his aunt Laura Celsie, who has established a charity in his name, Wyatt’s Warriors, to raise awareness of congenital heart defects, as well as money for Sick Kids Hospital and Wyatt’s care.

Celsie paints a picture of what it is like for families with babies who have a congenital heart defect. “It’s brutal. We’ve seen a lot of kids pass away,” she says. Her sister Lisa — Wyatt’s mom — has never left Wyatt’s side. “She has totally dedicated her life to him and fighting for him since the day he was born.” Lisa has given up her marriage, her home, her pets, her job and lives either at the hospital or Ronald McDonald House.

Congenital heart defects (meaning heart problems that are present at birth) are relatively common; they affect one in every 70 newborns in Canada. They are far more prevalent than Down syndrome, which affects one in every 800 births.

Much more should be done to screen for congenital heart defects, says Celsie. If screening was better, families would be able to prepare for having a child with a heart defect. In some cases, medical intervention can help reverse the problem.

When Wyatt was diagnosed just after birth, the family didn’t know anything about congenital heart defects, and couldn’t find much information. It’s a big contrast to the wealth of information available about cancer. “Congenital heart defects kill twice as many children as all childhood cancers combined, yet there is no funding for research, public awareness or prevention,” says Celsie, who is from Whitby, Ont.

Last April, when he should have been enjoying his first birthday, Wyatt underwent three heart surgeries in one month. In February this year, the family was told that there was nothing more that can be done for Wyatt surgically.

“Now we are just enjoying life with him, and teaching him new things, and trying to get them home. He enjoys pudding, both eating it and painting with it, and loves cheesecake. He plays with a bedfull of balls, and just this week got to go outside for a walk for the first time in over a year,” says Celsie. He blows kisses. “These are really little things, but when you see what we’ve been through, they’re big things.”

Going for a walk is a huge undertaking since it requires several people to help. Wyatt uses a special wheelchair/stroller and everywhere he goes he takes with him a feeding pump, a suction machine, oxygen, a ventilator and an oximeter — a medical device that measures oxygen in the blood.

Will Wyatt be able to enjoy his second birthday on April 27? “I don’t know,” says Celsie. “We are hoping to have a birthday party for him.”