The Rare Stitch

We all know that knitting can bring together communities and form bonds of friendship with other knitters all over the country, and the world. I think it’s one of the reasons we all like to knit! We can feel a closeness with people we otherwise might not have had the opportunity to meet, and our common interest (YARN!) is the common thread (pardon the pun). One of the lovely people we’ve had the opportunity to get to know, and work with on occasion, is knitter, designer, and fierce mom Margaux Hufnagel. We first met Margaux through Patricia’s Yarns, a local yarn store in Hoboken, NJ owned by our friend Patricia Scribner. That was nearly ten years ago! Way back in 2009, Margaux designed the 5th Avenue Cowl using The Fibre Co. Canopy Worsted.

Well, years later Margaux is still an active designer, and also one of the toughest moms I know. Her son James was born with a rare disease called AHC, Alternating Hemiplegia of Childhood. AHC is a rare neurological disorder which causes repeated and often unexpected attacks of partial paralysis, often affecting one side or part of the body at a time. Margaux has been a champion for her little boy, and the rare disease research community. In fact, James has managed to mobilize his entire family into an AHC fighting machine! Even Margaux’s amazing dad is now the Vice President of the CureAHC Foundation.

Earlier this month, Margaux emailed me to say:

“February 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 for the odds of rare disease. Thinking about your knitting as a population, how many hundreds of thousands of stitches do you knit? Now imagine if one of those stitches is “off”. A sea of stockinette but one isn’t quite the same… 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 affects less than 200,000 people in the US. My son James is diagnosed with Alternating Hemiplegia of Childhood which has only 380 cases. A one in a million chance diagnosis.

I’d love to start seeing these “rare stitches” pop up around social media! Maybe James is the one you know, maybe you know of another? Tell their story! By the time Rare Disease Day happens on Feb 28th, I can imagine seeing a flood of Rare Stitches all over the world.

You can use hashtag #therarestitch and tag me at @1010_studio when you post. I’d love to 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 the 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.”

Margaux’s Penelope Cowl, featured above, is available for sale on Ravely now. We hope you’ll join us in creating and posting a rare stitch of your own in honor of James and Rare Disease Day!

Thanks for sharing, Margaux. We love you!

2 thoughts on “The Rare Stitch

  1. Anne Marie says:

    GREAT idea. Enjoyed the post.

  2. Margaux says:

    Thank you Thank you Thank you. There is nothing that can beat the relationships that knitting has brought to my life! James and I are truly so lucky!

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