I cannot tell you how many blog posts I have begun over the past 4 years and not published (well I can because I saved them, over 20). Everything I write is wrong. I guess that’s what happens when a drug trial divides your community. On the one hand, I want to tell you what this intrathecal drug has done for Trey, what it has done for our family, and what it has done for our quality of life. I want to give hope to newly diagnosed families, because I have been told numerous times that is what Trey’s website has done for newly diagnosed families, give them hope.
On the other hand, when editing a blog, I always read it from various perspectives. And that’s where it ends. My blog. I can’t tell you all the great things this drug has done for Trey, our family, and our life because it’s not fair to all the families who want, but have been excluded from, the trial and access to the intrathecal drug. It’s a giant slap in the face, and not an insignificant slap. It’s a slap where some children live and some children die- when all the children could live. I know these dragon parents don’t blame me for Trey getting into the trial and their boys not, but if Trey hadn’t gotten into the trial and I had to read regular posts in our MPS or rare disease community about how great someone’s life is because of a drug that is tangible and real and saving lives, and although I fought with everything I had for this drug, the brutal unfairness of the pharmaceutical industry and approval agencies and lack of advocacy from organizations that I would think should force equal treatment to all humans, prevented my child from accessing this drug, I would barf or curl up in a corner and not get up or kill somebody. And I don’t want to do that to the awesome dragon mamas and parents I know. So I don’t write. If you wanted to know why.
Anywhoo, with enough intensity for a moment, this blog is about Million Dollar Meds, a project that took years to create and complete through UBC and the CIHR (Canadian Institutes of Health Research), that is all about living with a rare disease in Canada. We were a pretty big part of it, so although I am biased, if you’re interested in rare disease, it’s a great website to check out. And on International Rare Disease Day to boot!
www.milliondollarmeds.com
If you want detail on the above, call or email me and I’ll give you the goods.
XO for now,
Deb and the fam
PS. The above photo is of Trey and his service dog Griffin, right before bed. And yes, Trey is wearing nail polish, it’s part of having a sister and being a super nice brother. 🙂
PPS. Trey was diagnosed 10 years ago this past Valentines Day, which is a crazy thought for me to entertain.
PPPS. Trey turns 12 tomorrow (woohoo!)! We’re having pancakes with kiwi and mangoes and bananas, by request. And sushi for his party. Of course. With each year past age 10 that we never thought we’d get, it’s a day to celebrate.
