“Margaux gives people with rare diseases a voice with her #rarestitch. She has a son with a rare disease and came up with an idea highlighting a stitch in her knitting to symbolise a rare disease. You can listen to a podcast featuring Margaux here.”
We are so pleased to reach out to Margaux for this feature and share some of her beautiful Ravelry projects, her other crafty endeavors, and talk about the Rare Stitch project in anticipation of February 28, Rare Disease Day. We hope you enjoy learning more about Margaux!
How/when/why did you start/learn to knit/crochet?
Growing up I was always making things. In those early years it was friendship bracelets or doing a lot of beadwork making earrings or necklaces. My mother and grandmother were expert seamstresses and passed down their creativity. It wasn’t until a class in college that I was finally exposed to knitting. A girl in my public speaking class was demonstrating how to knit. She showed off her hat and I instantly became obsessed!
I was of the Stitch N’ Bitch era and while that maybe wasn’t the exact book I learned to knit from it WAS the first book I owned and worked from. I loved how she explained how to knit, her tone was fun and playful. I could SO knit with Debbie Stoller. I made a tote bag and a few hats before moving on to a sweater and soon I discovered knit blogs!
I don’t know exactly how I came across the blogs but I felt the connection instantly and quickly went out to create a blog of my own. I loved the immediate connection the blogs allowed you AND I loved being able to share the things I made and to help others with making it. Sure enough when Ravelry came around I was quick to sign up!
What hobby (or hobbies?) outside of knitting/crochet do you enjoy?
I love to do calligraphy and paint with watercolor. It’s provided an extra creative outlet and one so different from knitting. Changing gears from knitting to painting or drawing helps keep the creativity flowing. I’ve done wedding calligraphy and custom quotes to house portraits. I’ll rarely say no to a new job. I love the challenge. I’ve also designed tote bags that I’ve spotted people using at Rhinebeck!
I also really enjoy making pompoms and tassels and making things with them especially Pom Pom earrings! They are playful and add that bit of charm that totally embodies my personality. I never take myself too seriously and Pom Pom earrings certainly help. You can find all my work at 1010studio.com.
What’s one way that crafting has changed your life for the better?
The connection to others. How could I have known that after learning how to knit it would be a bridge to so many people. I used my knitting to make friends in towns and cities where I knew literally no one. I’ll never forgot how impressed my brother was when I trudged off to a pub all alone to meet knitters when I went to visit him in London. I know it’s so cliche but I truly love this thread that connects us.
I love my local yarn shops and the people that have come into my life because of them. Knit nights are my favorite and I’ve often spent hours upon hours sitting and hanging at shops.
These are the same people that have been there for me when things have gone sideways.
I also love that knitting has become an important metaphor in my life.
My son was diagnosed with Alternating Hemiplegia of Childhood, a 1 in a million diagnosis, when he turned one. AHC, for short, is a rare neurological disorder that causes muscle weakness and episodes of paralysis. Children with AHC suffer from developmental delays and are often also diagnosed with Autism or Epilepsy. There is no viable treatment for AHC and most persons afflicted are using experimental drugs to help curb their symptoms. Despite all that, James, who turns 6 next month, has continued to thrive and surprise us all with reaching and passing his milestones.
Last year I began a campaign to raise awareness through knitting starting “The Rare Stitch” project. I kept thinking of ways to explain the rarity of his type of disease and thought about all the stitches that have come through my hands.
What if those stitches represented people, and what if ONE of those stitches was different in some way. I asked knitters to add a duplicate stitch of a contrast color to their knitting to represent the odds of rare disease. Soon, people began to share their stitches on social media and were able to share their or James’ story.
I read stories about knitters, their partners, their children who also suffer from a rare disease. I am so grateful to give them a platform in which to share that part of themselves.
Having a rare disease can be very isolating. There isn’t a big company with a sole mission to raise awareness and money for research, it’s just a few families working hard to keep the hope alive for a cure or treatment. We work hard to share stories and awareness in the hopes that those who will find us will be generous enough to donate to our cause.
Right now we are raising money for a new type of gene therapy treatment. It’s called the AAV Project and we are hoping to raise $500,000 just to bring it to the next phase. If you want to learn more about the project or donate please visit CureAHC.org. It’s so fitting to share my story in February as Feb. 28th is Rare Disease Day! It’s a perfect time to add that Rare Stitch and show your support to all those who are afflicted with a rare disease.
Are you a product or a process crafter?
I am very much a product knitter. My eyes are always on making something wearable and I feel a tremendous amount of joy/pride when I finish something. While I do appreciate the mindlessness of stockinette or the challenge of a new stitch pattern, it’s the end result that drives me.
What sustains your enthusiasm for crafting?
Definitely seeing my friends being successful and showing off their knits. AND showing up to a shop or cafe and knitting with friends. I am someone who loves connecting with people and literally will do a dance of joy if I know a knit night or fiber weekend is on the calendar.
I am so lucky to know such amazingly talented knitters and designers and to call them my friends.
Thank you so much for having me share my story!
Thank you so much, Margaux! We’ll be back in a few weeks with another Human of Ravelry! If you’d like to keep up with Margaux’s beautiful projects in the future, add her to your Ravelry friends and look for updates on the main friends tab. You can also find her on her website at 1010studio.com, Instagram @1010_studio, and Etsy at 1010studioshop. If you incorporate a Rare Stitch into your work, please be sure to tag your Ravelry project with #therarestitch so that these pieces can all be found in our project search!
If you have a Ravelry friend or someone you know is doing great things on our site, and you’d like to recommend we feature them here in the future, please share with us!