Today, Feb 28th is Rare Disease Day. The day we get to shine a light on so many kids and adults living with a Rare Disease including my son James.
I have been thinking of ways to increase awareness for Rare Disease in the community I love so much and realized that knitting is a perfect metaphor of the odds of rare disease.
Thinking about your knitting as a population, how many hundreds of thousands stitches do you knit? Now imagine if one of those stitches is “off”. A sea of stockinette but one isn’t quite the same as the others.
So what am I asking you to do? Something very simple. Grab a knit you’re working on or one you already have and duplicate stitch One Stitch in a contrasting color.
One stitch of so many that is different. That stands out from the rest. That can’t be ignored.
A disease or disorder is defined as rare when it effects less than 200,000 people in the US. My son James is diagnosed with Alternating Hemipelgia of Childhood which has only 380 cases. A 1 in a million chance diagnosis.
Tell a story with your stitch. Maybe James is the one one you know, maybe you of know another? Fill our spaces with the stories of those who would normally be forgotten in a sea of so many others.
You can use hashtag #therarestitch and tag me at @1010_studio when you post. I’d love so see them and want to create a huge “collage” by the end of the month! Please encourage or tag others to keep it going.
A donation to CureAHC.org or your Rare Disease charity of your choice is optional and always welcomed.
James (4) is going into Kindergarten next year and this spring will be one of huge transition. He still has episodes of weakness weekly and I do worry what his life will look like when he’s older.
However, seeing the village around us supporting him (and me) as we keep making our way through this Rare Disease world is amazing. I know I wouldn’t be as chipper as I am without you all! I cannot thank you all enough for being a part of our journey and helping to shine a light on that One Stitch of many.
Love to you all,