Each month on the anniversary of my kidney transplant, I take a few minutes to be grateful for all that I have in life. Today, I’m grateful for hope.
Every once in a while, I’m reminded at how different my life is from that of other parents.
It happened the other day, when I was interviewing a New York mom for my next book about resolutions. She’s in the midst of training for this November’s New York Marathon.
Thinking about my own life as a dad, I asked her whether it was hard to find time to train.
“I have one child, and she’s 11, so it wasn’t,” she told me.
The situation for my wife Laura and I is very different. Our youngest son Bryson is also 11, but he’s got a rare genetic condition that means he can’t walk, or talk, or feed himself, or use the washroom himself. He has violent seizures that can lead to him hurting himself and those around him. We pay for a full-time nanny, and get a few hours each week of government support, but in the evenings and weekend when they’re not around, we are on constant Bryson duty. If one of us wants to sleep in, or catch up on work, or go out with friends, or go for a run, it’s a negotiation. We’re thinking about taking a trip without the kids this September to celebrate our twentieth wedding anniversary, but the logistics of lining up enough support for Bryson is mind-boggling.
So when I heard the inspiring story of the mom who is achieving a life-long goal of running a marathon, it kind of bummed me out. As much as I try to stay positive, and focus on gratitude for all the wonderful things I have in life (including Bryson!) I was starting to feel a little sorry for myself.
I needed hope.
And I got some.
Hope for GRIN1
Since we got Bryson’s GRIN1 diagnosis in 2015, we’ve connected online with people from around the world with same condition. Once a year, we also get together in person, first in Colorado, then last year in Pittsburgh. This week, Laura and I hosted the get-together in our city of Toronto.
Along with several other GRIN1 families, we went out for dinners, to a Toronto Blue Jays game, and visited Niagara Falls. The main event was a day-long symposium where we welcomed some of Toronto’s leading brain scientists to speak to us about their research and how it related to our childrens’ future.
The science was dense and often difficult to understand, with talk of “N-Methyl-D-aspartate receptors” and “lonotropic glutamate receptors.”
But through it all, one message broke through: A message of hope.
Hope is something that has been a rare luxury in our 11-year journey with Bryson. At first, we took heart in the fact that Bryson was progressing, even at his own slow pace, and that we didn’t know what his limits would be.
Over the years, however, we’ve had to resign ourselves to the reality that he might never walk, or talk, or be able to feed himself, or live on his own, or have a job, or get married.
The researchers that spoke to GRIN1 families this week gave us a renewed sense of hope. First, they told us that research on mice suggests that GRIN1 symptoms are reversible. If scientists can find a way to repair the broken gene — either through gene editing or drugs — Bryson’s brain could begin operating very much like any other.
Second, they told us that while CRISPR and other gene-editing technologies are likely decades away, drug-based cures may not be. Pharmaceutical companies are investing substantial resources in the part of the brain that affects Bryson and other GRIN1 children, because it’s believed to be related to several other brain disorders including Alzheimer’s. It’s reasonable to think, they told us, that before too long, there could be drugs that would allow Bryson to learn and remember like other people.
We now have hope that Bryson’s story could have a happy ending, a miracle ending, that as a teenager or young man, his muddled brain could be awakened and he could learn to walk, and talk, and work, and have a job, and fall in love.
That’s why today, I’m grateful for hope.
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Very inspiring Keith. We will hope with you!
Thanks Patsy! I know you’re hoping and praying for our Bryson.
Excellent article and we are feeling hope too, Keith!
Isn’t it great to finally have cause for hope for our GRIN1 kids?
This is such fantastic research and hopeful news Keith! I have a similar journey with my son as he was born with a rare genetic disorder as well. It was only discovered the year he was born, in 2011. Then he was later diagnosed when he was 4. I’ve spent a lot of time and late night hours researching it and finding an online community that’s walking the same medical path as to not feel so alone on this journey. I’m so happy you and your family have hope as you inspire me to continue advocating for hope for my son. 😊
Having a community is so important. Honestly, that was the biggest change for us after we got a diagnosis… that we were no longer alone.
I agree, I spent so much time thinking I was alone and through one incredible friend she introduced me to a whole tribe! Now you have me as part of your community as a researcher, friend, and medical parent. 😊