The Rare Stitch

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 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,
IG: @1010_studio

12 thoughts on “The Rare Stitch

  1. conservationgal says:

    This is such a wonderful idea! My daughter was born in December and we immediately (fortunately) found out she has Tethered Cord Syndrome. While it isn’t as uncommon as your son’s conditions, it is still a rare disease and we’ve been preparing for and coming to terms with what it will mean for her going forward as we begin to meet with neurosurgeons and work to get her treatment. I think this is a great way to express what it feels like to have a child with a rare disease and will definitely find or start a project to add her stitch to.


  2. Susan Ferris says:

    Hi Margaux, I am so inspired by your “one stitch”! I have had people, including many children, in my world with challenging and life threatening illnesses. I truly believe that only God is perfect, and that we will all have quirky or more challenging health things that show up eventually. It’s just a matter of what and when and what can be done to address the problem, but the problem should not define the person. These conversations can help people be kind and realize the need for us all to support each other. What a wonderful way to spark awareness of the needs of those we encounter in our daily lives. The quilters intentionally add a “mistake” to their quilts. I’m going to start adding “one stitch” to all my knits today. Thank you for sharing your voice with the knitting world.


  3. Melissa Thorner says:

    What a wonderful idea!! My son and I have Type 1 Familial Mediterranean Fever, a less-common presentation of a genetic disease that affects approximately 1 in 200,000 people in the US but is much more common in the Middle East, where people are diagnosed very early. There is no cure, only treatment, which doesn’t work for everyone (thanksfully it does for us).

    Thank you for helping bring awareness to rare diseases and the desperate need for funding!


  4. Karen says:

    I love this idea. My husband has Huntington’s Disease and it has devastated his family. I plan to incorporate your idea from now on in my knitting. Bless you and your son.


  5. Becky says:

    I love this idea! My son is one of 400 in the world with a rare disease called WAGR syndrome. He has had to go through so much in his 16 years. From cancer as a baby to more recent renal failure… he’s now a kidney transplant recipient!!!! And so many other challenges and obstacles in between. He’s just the epitome of joy and grace, an absolute blessing, and even though he’s nonverbal, he communicates through sign language and amazes us every day!! Hugs to you and your family! —Becky (wagrmom on Ravelry)


  6. Alice says:

    Thanks for creating this project! My friend’s son has DYRK1A, another extremely rare disease, I’m going to share this with her and see what charity I can support in his name!


  7. Amanda says:

    I LOVE this idea and it’s going on the grey cabled shawl I’m knitting right now. I’m in Canada and my daughter has Smith-Magenis Syndrome… but she has a friend that has AHC. She’s the sweetest thing. So is her mom.

    I love this idea. Thank you for sharing it!


  8. razzilou says:

    Margaux, hello! I’m just meeting you and your beautiful knitting, writing & heart today through your featured profile on Ravelry. I love the plan to incorporate a special stitch into our projects and will be doing that from now on. I asked my great-aunt to re-teach knitting to me when I began to acquire Autoimmune Diseases 9 years ago —I have 6, 3 of which are rare and keep me from using my muscles in the ways I used to — but I can knit! Thank you for all you and your son are giving to all of us!


  9. Natalie says:

    Hello Margaux,
    Thanks so much for sharing The Rare Stitch project, LOVE the idea! I have Ehlers Danlos Syndrome myself and am the parent of a daughter who has been diagnosed with an ultra-rare genetic disease, Familial Cold Autoinflammatory Syndrome type 2 (FCAS2/NLRP12) as well as another rare disease, Beals Syndrome. She also suffers from POTS, Dysautonomia, & MCAS among other health issues. We completely understand the isolation and lack of understanding that accompanies chronic illness. As an avid knitter, I am excited to add the rare stitches to my projects to help raise awareness for rare disease. Thanks again and blessings to your family.


  10. Lynn Riley says:

    Beautiful, simple idea to raise awareness. I’m a nurse who cares for children with rare diseases in their homes. I’m going to start to do this.


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