Blue Jays fan who has weeks to live set for Dunedin dream trip
· Toronto Sun
With his bags packed, Wes Johnson is ready to go see his beloved Blue Jays at spring training in Dunedin, Fla.
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His mother, Jennah Johnson, said no one deserves it more, though she does note her son may have overlooked a couple of things.
“All he seems to think he needs is his Blue Jays hat and a glove,” she said. “Apparently, that’s all he’s taking for seven days. Everything else I have to remember.”
Dream trip achieved
It’s a wish fulfilled for the 17-year-old Blue Jays fanatic from St. Thomas, Ont. His mother, father, two brothers and a family friend are coming along for the dream trip before they have to say goodbye to him. Wes was born with hypoplastic left heart syndrome, a congenital heart disease that causes an underdeveloped left ventricle of the heart.
The trip was funded by a GoFundMe for the teen, which Sportsnet broadcaster Jamie Campbell recently lent a hand to promote.
Wes has gone through multiple surgeries and taken different medications to address the condition, and was on a waiting list for a heart transplant for years. But with the emergence of another condition called protein-losing enteropathy and failing kidneys, there’s nothing else to be done for him.
Jennah, who strongly advocates for organ donorship , says it’s not the fault of the health-care system; there was just never an appropriate organ available for a transplant when Wes needed it.
“The team did all it could, but unfortunately, there’s not a store where you can go buy a heart. You need donors,” Jennah said. “We don’t have enough donors for the organs that we require. And there just wasn’t one of the right size or blood type that came in at the right time for him.”
Off to Dunedin
The family flies into Tampa, Fla., on March 7 and will be back in Canada on March 14. Wes will be in the stands on March 10, cheering on the Jays, wearing a Vladimir Guerrero Jr. jersey signed by Vladdy himself when the Jays’ slugger met him at SickKids Hospital. It’s bittersweet, Jennah said, as Wes also wants to be cremated wearing it, along with a shark-tooth necklace matched with a friend from Ronald McDonald House.
“Literally being there is more than we thought we could do for him,” Jennah said. “There are tears of absolute joy and excitement that this is going to happen for him. I don’t know that there’s another human being on this planet who deserves this more than he does. He has worked so hard, graduated high school early, got his (driver’s) licence, volunteered through SickKids, never complains. He’s the best big brother you could ever imagine or hope to have for your children.”
Wes’ favourite Blue Jay?
“That’s a loaded question, my dear,” Jennah said.
Vladdy’s up there, for sure. And he’s met former Jays pitcher Erik Swanson, Ernie Clement and he of the bat flip, Jays legend Jose Bautista. But it was pitcher Trey Yesavage’s lights-out performance in the postseason and scrappy underdog status that left a lasting impression on him.
“Wes always wanted to be a pitcher, even when he played baseball as a youngin through a team for children with medical means so that they could get an opportunity to play too and he was always, ‘Can I pitch? Can I pitch?'” Jennah said. “Trey hit the ground hot and there was that underdog expectation where people didn’t expect a whole ton, but (the team) got more than they could have imagined out of Trey. So I think that resonated with him.”
Celebration of life
The trip will follow a celebration of life that was held last Saturday for Wes, who chose to say goodbye to family and friends while still alive rather than have a funeral. If someone has something to say to him, he wants to hear it.
“He felt that (a funeral) wasn’t going to be a very positive memory of him for his little brothers, which was very ‘Wes’ of him,” Jennah said, adding that he has always put others first, so much so that he suggested passing on in a hospice rather than at home because he doesn’t want his brothers to associate their home with his death.
“He’s thinking about others. Even after he’s gone, he’s thinking about how it’s going to affect everybody else. He even said, ‘The amount of money you would spend on a funeral, take my brothers away on a trip. Get them out of their heads. Make it something that when they look back, of course, they’re going to be sad, but more that we took care of their hearts rather than having a funeral.'”
Wes’ legacy
Jennah said her life has revolved around looking after Wes since the day he was born, so she’s not sure what her life will look like, though she knows it will be very different. She said she wants to write books, advocate for organ donorship even more than she already does, and use Wes’ story to help ensure other families don’t have to go through what hers has had to endure. With February being Heart Month , there couldn’t be a better time to raise awareness.
“I was 19 when I had him, and at 20 weeks pregnant, I knew this was the life I was going to lead, that I was going to be a heart mom, and that my life as a mother was going to look different than what I originally thought,” she said. “He’s my first baby, and now that journey is coming to an end … I don’t want another teenager or a child to have to hear the words, ‘I’m sorry, there’s nothing we can do for you.’ Wes’ story doesn’t end when he takes his last breath. If anything, it’s going to begin. There are some mountains we need to move and maybe it will be Wes who helps us move them.
“Some people never get to meet their heroes, I got to give birth to mine.”
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