Weslee’s family finds home and hope at RMHC Toronto as he awaits a heart transplant
Weslee is a kind and compassionate fifteen-year-old who’s had to live an unusually courageous life. Diagnosed in utero with hypoplastic left heart syndrome, doctors initially suggested comfort measures and pregnancy termination to his mother, Jennah – “which was never an option,” she says. The soft-spoken and polite teenager was born fighting for his life, backed by the unwavering support of his family and his fiercely protective mother.
“I cry so often,” says Jennah with a laugh. “But not when it counts. I’m pretty tough when it counts.”
The St. Thomas, Ont., family have had to travel frequently to Toronto for Weslee’s treatment. They first stayed here when Weslee was four, and Jennah is grateful that it allowed them to experience a semblance of normalcy outside the hospital walls.
“Staying at RMHC Toronto meant we were actually able to get Weslee out of the hospital for a while, during the four months that we were here,” explains Jennah. “When you’re not having something done specifically that day, it seems almost cruel to keep kids institutionalized if there’s a place like this where they can go and still be kids and have access to their family.”
Ten years later, they had to move back to RMHC Toronto when Weslee experienced a complication of open heart surgery and got listed for a heart transplant again. The family has been here for thirteen months while they wait for the call that a heart is available. Weslee’s baby brother, Maverick, born only two months before they returned, took his first steps at RMHC Toronto.
“This is home for Maverick,” says Jennah. “When we go back to St. Thomas, he recognizes the house, but this is home. When we pull up here and we’re walking back in the building, he gets excited. It’s very nice to see that.”
For the entire family, RMHC Toronto is more than just a roof over their heads, it’s a lifeline – a place like home with a community of other people going through similar experiences.
“You know everybody here,” explains Jennah. “We all know that we’re here for the same reason, and it’s an invaluable asset to have that community feel. Not being alone when these things can be so isolating, especially when you have to move away from your home and everything that you know – your school, your friends, church, all of those things. It means a lot to know that there’s eighty other families in this building at the same time who get it. Our diagnoses might be different and our journeys might be different, but we’re all here fighting for our kids.”
One of the special features of RMHC Toronto that makes it possible for Weslee’s whole family to stay together here is our onsite school, which Weslee and his middle brother, Oakley, both attend. Our EASEL program (Engaging Academic, Social and Emotional Learning) has made it possible for Weslee to stay on track at school, with the flexibility to work around his medical appointments. And Oakley, who has autism, has found a nurturing space at RMHC Toronto School, where individualized attention and understanding educators have transformed his educational experience.
Now that he’s back at the House as a teenager, Weslee noticed the need for more activities tailored to older kids, and wanted to do something to give back. He led a fundraising drive on his own initiative that brought in 49 donations of games and movies for teenagers staying at the House. Several donations were made by families Weslee and Jennah have met in their time at RMHC Toronto. Supporting Weslee’s initiative gave them a meaningful way to honour their own experiences at the House.
Giving back means a lot to this family, who are so very aware of, and grateful for, the support of donors who have allowed them to call RMHC Toronto home.
“Money can’t buy happiness,” says Jennah, “but it can buy time. Without this heart transplant, Weslee may not have another year, but the generosity of donors has bought me time with my son. Somebody buys their Happy Meal on McHappy Day, and I get another day to be beside my son when he needs me. There’s no greater gift than time with your child when you don’t know how much more time you have left. Thank you for giving us time.”
While Weslee’s family continue to wait for the call, they live as normally as possible at RMHC Toronto – eating meals together, getting ready for school in the morning, and participating in activity programming on evenings and weekends. Weslee is often asked for programming ideas by our staff.
“We’d love to come back in the future, but not to stay,” says Jennah, smiling at Weslee. “Maybe he’ll work here one day.”