MPS II threw my life upside down. When Ryan and I were pregnant with our first baby, Trey, our midwife told us that although we wouldn’t want to, we should consider and talk about what we would do in the case of a stillbirth. Ryan and I tried to have a conversation, but it was awkward and uncomfortable. We talked about it briefly and superficially, avoiding the bigger conversation- impermanence.
If we don’t have to talk about it, we won’t. Impermanence- death- is so scary, we don’t speak of it unless we’re forced to. Well, MPS forced my hand. I faced death and am now open to the conversation. Most still aren’t. Our reality is most people’s nightmare. I get that. I wouldn’t have faced it if I wasn’t thrown into a world facing death if not daily or weekly, monthly.
Now that I’m in the middle of the conversation though, my life has changed completely. Ana Forrest in her book ‘Fierce Medicine’ talks about stalking her fears. It’s a horrifying prospect, but when we can actually face and stalk our fears and come to the root of them- death- life, surprisingly, lightens up. Really.
Days like yesterday, which was The Scotiabank 5K and 1/2 Marathon Run-for-a-Cure, highlight my changed life. One of my best friends from childhood, who just had a baby and is getting married in less than a week, came to run. My cousin, hugging me after the run, told me that as she began her half marathon, she thought of our journey and all we’ve been through. She told me this with tears in her eyes. Trey’s ENT doctor joined our team and ran for Trey. The picture above, of my kids and my nieces and nephews all wearing shirts emblazoned with ‘Run for Trey’…
This journey we are going through has not only changed us, it has changed the people around us. Our friends and family- our community- raised over $10,000 for this run. $10,000 is not a small amount of money.
So while I would not have picked this journey in a million years, Trey and MPS have changed me and the people who surround us, for the better. THANK YOU to all who supported us in our run. You can see pictures from the event here.
I am SO excited to say that because of all your support, we are able to fund not one, but TWO $50,000 gene therapy research projects this year, Dr. Scott McIvor’s AAV Mediated IDS Gene Transfer for MPS II and Dr. Brian Bigger’s Evaluating stem cell gene therapy for treating the brain in Mucopolysaccharidosis II. In less than a year, we have funded over $200,000 to MPS II research. It makes me smile every time I think about it. HOPE for a future for our kids. You can read the full summaries of the research we’re funding on our grants page here.