Weslee Johnson always knew he wouldn’t live long enough to get old. “I just tried to live life with no regrets,” said the 17-year-old teen from St. Thomas, Ont. Born with a congenital heart disease called hypoplastic left heart syndrome, it causes an underdeveloped left ventricle of the heart. He had multiple surgeries and used different medications to try to fix it, but it got to a point where nothing else could be done. “We went to Toronto in November of 2022, and were listed for a heart transplant,” said Jennah Johnson, Weslee’s mother. “We waited just over three years for a heart transplant and now, unfortunately, his other body systems have just been damaged so much from having the broken heart. His body now can’t handle a transplant, so we waited three years for a heart that never came.” It’s a heartbreaking story of a young boy who could pass away any day. “I just try not to think about it too often,” said Weslee. “Our family uses dark humour to get through it.” Doctors have said he has just weeks to live. Before he passes away, his family has brought him home from Sick Kids Hospital in Toronto. Saturday, they held a living celebration of life. “Wes said he didn’t want a funeral,” said Jennah. “He literally looked at me one day and said, ‘If people have something they want to say to me, they should say to me now, not tell me later.’” Dozens of family and friends gathered to share positive memories and stories. “Being able to spend today with him when he’s in such good spirits and such good like health relatively compared to where we’re headed, is really special for us,” added Jennah. “It’s a memory for us, and it’s a positive memory for his siblings too.” Weslee is a massive Toronto Blue Jays fan. Everyone in attendance at the gathering was asked to wear their Blue Jays gear, and he even received a special surprise video message. “What’s up Wes? Davis Schneider here of the Blue Jays,” the Blue Jays outfielder said in a video. “I’ve heard you’re big Jays fan, so I just want to say thank you for all the support and I’m hoping you have a good time at your party with your friends and family.” A recent online fundraiser has brought in more than $16,000 to send him to Dunedin, Florida, as a dying wish and a family friend bought them tickets. “I hear you are coming down here in a couple weeks and I look forward to meeting you,” said Schneider. His dream of attending a spring training game is what is driving him. “There’s been a couple of days in the last week or so where we weren’t sure if he’d make it to today, but we’ve managed,” said Jennah. “He’s rallied again and he’s really looking forward to this game.” Weslee is a typical teenage boy who loves video games and sports. Over the past few years he was able to graduate Grade 12 with honours (despite having a failing heart), he got his driver’s licence and worked on an advisory council during his time at Sick Kids. He’s trying to draw inspiration from the Tim McGraw song “Live Like You Were Dying.” “I just try and live every day like it’s your last and stay positive,” said Weslee. He’ll spend his final days with family and friends. Meanwhile, his mother hopes her son’s story will encourage people to sign up for organ donation. “These conversations have to happen,” said Jennah. “They’re uncomfortable, but we need more organs, period. People need to donate more, and it needs to be talked about more.”
