“We found out that there was something different about Bree quite early on in the pregnancy. Soon after, we received confirmation that she had trisomy 13, a rare genetic condition involving an extra copy of the 13th chromosome. Most people are familiar with trisomy 21, Down syndrome, but trisomy 13 comes with much more intense medical challenges. We were told by medical professionals that the typical lifespan of a child with trisomy 13 is seven to ten days.
With that one piece of news, every hope and expectation we’d had about what life would be like for our second daughter — and what our life would be like with her — just evaporated. Suddenly I was going into the beginning of her life already preparing for the end of it.
And, at the same time, my mother was moving through the later stages of her journey with pancreatic cancer. So it felt like death was closing in from both sides.
But just as every cancer journey is unique, so, too, we discovered, is every child’s experience with trisomy 13. There’s a huge spectrum of different ways this condition can manifest itself, and Bree was fortunate to land at the milder end. She is anything but typical.
Bree spent the first 42 days of her life in the NICU at MountSinai. She needed surgical intervention on her airway. She needed a G-tube. She needed medication to reduce the severity of her seizures. The list of her disabilities kept growing. It was a lot. But the days kept adding up, and everyday that passed was an expectation defied.
And then, when Bree came home, our family became something new. Bree’s older sister, Shyla, loves her more than anything. Shyla is always climbing into Bree’s crib, holding her hands, giving her sensory experiences, because she knows Bree has very low vision. And, when Bree hears Shyla’s voice, her face lights up every time with the biggest smile.
Bree is the happiest child I’ve ever met. There’s still a timidity when we think about the future — we still don’t know what’s going to happen next year, or next week — but, slowly, I’ve found myself no longer preparing for her death. Instead, I’m focused entirely on making her life as meaningful, as full of joy and love, as it can be. For however long it lasts.”
“Before my daughter Bree was in my life, if anybody had asked me if accessibility was important, I would obviously have still said yes. Almost every Canadian would. But most people don’t think about it much more deeply than that. Yes, accessibility is important. Oh, look, a wheelchair ramp. Job done.
Now, though, it’s clear to me that accessibility needs much more than a one-word answer. That wheelchair ramp might be too steep, the button for the door might be too high, and even if a wheelchair user gets into the building, they might find themselves treated like a nuisance or a second-class citizen. I’ve realized that the world we’ve built is truly not designed for people with disabilities, people like Bree. And though I would always have agreed that people with disabilities deserve the same rights and respect as everyone else, I’m now all too aware of the ways in which those rights and that respect are not afforded to them.
To say that Bree has reshaped my life would be an understatement. The moment we got her diagnosis of trisomy 13 and learned of all the medical challenges that would entail, I knew that one chapter of my life had ended and a new chapter had begun. Bree has a lot of disabilities and I know that, when people look at her, they see her limitations. But there’s so much more to her. I want people to understand how meaningful and valuable her life is, how full it is, just like the lives of everyone living with disability. I realized early on in this new chapter that I needed to be actively working toward creating a better and more compassionate world.
No part of my life was off limits to this reinvention. I’d built a career as a program manager at tech companies. I was good at it, but I was no longer finding meaning in that work. So, when I saw that AccessNow — an organization directly focused on the accessibility causes I’d become passionate about — was looking for a program manager, it was an easy decision. It’s given me an opportunity to bridge my personal and professional experience, to do work I truly care about.
Because being the best dad I can be for Bree includes changing the world around her.”
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