It’s 6 days until race day, and I was starting to feel poorly that my official run next week wasn’t going to be dedicated to our MPS VI crew. So – I rectified that this morning and did a 1/2 marathon for training! This one is for all the MPS VI kids I’ve been lucky enough to help in this country (Isaac, Jasper, Violet, Aleena, and Kamie) and for the incredible kids I’ve been lucky enough to follow along and watch their journey from the start (Lillian and Holden). This run is also for the MPS VI families I’ve been fortunate to know online, to the families who have helped us along with whatever battle we’ve been fighting (Ethan and Frida). And finally, this one is for you Kendra – a hero who led the way for our kids to get the treatment they need approved during the clinical trials.
Today’s run was a good one to dedicate to my fellow MPS VI families – it’s the first one since I returned back from New Orleans, the first on since we received our update on the Gene Therapy project we’ve given over $1/4 million towards and get it off the ground. I’m still waiting for permission to share the news we received on where things stand, but what I can say is that I truly believe we’ve moved on from HOPE to HERE. Everything we’ve worked so hard to see happen is now upon us, and I’m waiting with anticipation to share everything with you as soon as I can!
Working to bring ERT to Canada for our kids was tough. I lost a lot of sleep fighting for Isaac, Jasper, Violet, Aleena, and Kamie, and I lost a lot of time away from my kids during the busiest moments of those battles. I’m so very lucky to have played a small role in helping you all have the chance at life you deserve. Knowing you these kids has changed my life, and I’m a better person for it.
At the same time, I’ll never forget the moment I had to tell Isaac I couldn’t spend any time with him – time I had promised was his – because I was working on a media campaign to help Aleena get the treatment she needed. Isaac looked me in the eyes, ran over and hugged me and said “It’s OK, Daddy. You’re working to save her like you did me and I understand.” It was one of the most heartbreaking and sweetest moments of our time together, but it made me realize that I needed to make some changes in my life and ensure that I could do both. It’s one of the things that helped me make the final decision to leave my classroom and focus full time on finding a cure for our kids because if we find that cure, all of our battles will be over.
And I think we’re close. No – I KNOW we’re close. And thinking of all of you during my run today made it easy out there, even though I was running through our cottage roads and up and down hills for the majority of my time running.
Our RUN FOR A REASON event has raised over $300,000 over the past 10 years – money that we’ve sent directly toward finding a cure for our kids. It’s fitting that this 10th anniversary run is one that takes place while we’re on the cusp of finding that cure for our kids, and I can’t wait to get out there next weekend and celebrate on the course.
I’m incredibly blessed to have all of you in my life. Thank you for enriching my life the way you have. I wouldn’t be the same without you.
If anyone out there would like to support our Run – our Hope for a cure – please click through and spare what you can.