Dear Hockey Family,
I’m here to share news we prayed so hard we’d never have.
Chris has been diagnosed with ALS.
ALS is a horrible disease, and when we went to Miami to see one of the best ALS doctors and researchers out there, we prayed hard. We believe there are miracles in the world and maybe, maybe we would get one.
And we did, just not the one we’d hoped for.
In the same breath as the doctor telling us that Chris was in the early stages of ALS, he also gave us hope. The next step, he said, was to enroll Chris in a clinical trial for the most encouraging ALS gene therapy treatment to come along. The drug targets a specific genetic mutation that has devastated Chris’ family. Just over one year ago Chris’ dad passed away from ALS. We have also lost both of Chris’ paternal uncles and his 28-year-old cousin to this disease.
In the simplest terms, this drug works by silencing the effects of the mutated gene, and in Miami we could see how hopeful the doctor felt. So hopeful that when I asked if he believes this drug could stop progression entirely, he said, “We don’t know, but it’s not outside the realm of possibility.”
And so we are leaning into that possibility, as hard as we can, working to stay positive and living with intention every single day. And now we believe we have results to lean into as well.
Chris has been in the trial for several months, and while we do not know whether he is on the actual drug or a placebo, the disease since that initial dose does not seem to have progressed. His right hand and forearm remain the only affected areas of his otherwise strong and healthy body.
Someone has to be the first person to live with ALS rather than die from it, and one thing I’ve always known about Chris is that he finds a way. No matter the obstacle, no matter how unprecedented the situation may be – he always, always finds a way.
We know that our hockey family will want to help, and we appreciate that so much. Here’s how you can do that.
Be positive and hopeful with us, pray for us in whatever way you pray, and don’t treat us – most especially Chris – differently than you always have. He is the same person today he was yesterday and he will be the same person tomorrow and in two months and beyond. Hug your family, wring all the joy from each moment of your life, play with your children, and be present – all things at which Chris has always been wonderful.
Continue to love us and love our kids. Of all the devastation this diagnosis brought, the idea of telling the two of them they were going to lose their dad was the most crushing. But now we have hope and, we believe, a different story.
The most tangible way you can help us is by donating to research. ALS is a rare disease, and rare diseases aren’t easily cured. Fewer than 20,000 people in North America are estimated to be living with ALS. Of them only 2,000 are living with familial ALS, the kind caused by a gene passed down within a family. And yet this has torn through Chris’ family. At the University of Miami researchers are focused on developing treatments for ALS, including those with familial forms of the disease. They have pioneered the study of the pre-symptomatic stage of ALS with the goal of one day being able to delay or even prevent the disease. With your help they can afford to do more and do it faster. To donate, please visit this link: http://uom.convio.net/goto/chrissnow
The next most powerful thing you can do for us is to believe in this treatment. Our hope is rooted in the results we believe we are seeing and in the optimism expressed by doctors who have spent their careers studying this disease.
As our neurologist said after Chris received his first dose in the trial – “We’re here to make history.”
– Kelsie Snow