• The Duane's Syndrome Awareness Bracelet By Knotty Origami

     

    UPDATE:  We have loved making and carrying the very special Duane Syndrome Bracelet!  Inspired by a mom who asked for a bracelet to be designed for her daughter, it has been a cherished listing in our shop that enabled a  5% donation to Boston Children's Hospital each year.  Unfortunately, Knotty Origami is discontinuing all of our braided designs which include the Duane Syndrome Bracelet. Once all are sold out, they will not continue to be carried in inventory.  Thank you for checking in with us, and we wish you the very best. ~ Tricia

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    I was recently contacted by a good friend with a request to design a special bracelet to help raise awareness about Duane's Syndrome, a rare genetic condition that affects the wiring of the eye.  Her daughter had been diagnosed with Duane's Syndrome and she hoped to have a bracelet with the colors and symbol that many associate with awareness of the condition:  a pretty pale green color and an owl. 

     

    Prior to her request, I had never heard of Duane's Syndrome, but have since learned that it is a condition that affects the alignment of the eyes, making it difficult for a person to look in certain directions.  There are also several types of Duane's Syndrome which correlate to the ways in which the eyes can be turned:  Type I (Outward), Type II (Inward), and Type III:  (Both).

     

    My friend says that it took quite some time to diagnose her daughter with Duane's Syndrome.  It was difficult to tell, at first, if her child's eyes were unfocused because she was so young and still developing.  We recalled an impromptu photo shoot one day where we snapped photos of her newborn.  She had no idea about Duane's Syndrome at the time, either.  But, no one could deny that she and her husband had made a beautiful, perfect little girl. 

     

     

    Thankfully, my friend has found several Duane's Syndrome Support Groups online to help with questions as her family works on the way ahead to find treatment options for their daughter.   You can find several by running a search on Facebook for "Duane's Syndrome" or by using Hashtags: #DuaneSyndrome or #DuanesSyndrome across social media.
     
    You can find more resources and accounts  about Duane's Syndrome below:
     
     
     
     

     

    I am so thankful that my friend's family has been able to figure out, with the help of experts and supporters, that their child has a formal diagnosis of Duane's Syndrome.  They have a treatment road ahead of them, but it is one that is paved and strengthened by enduring love. 

     

     

    Knotty Origami is thrilled to be part of any effort to help raise awareness and will be giving away a Knotty Origami Duane's Syndrome Awareness Bracelet on January 16th, 2015 via the Knotty Origami Instagram Page.

     

    Announcements for the start of the #DuanesSyndrome #Giveaway will be made via Knotty Origami on Facebook, Twitter, and Instagram .

     

     

     

    Each Knotty Origami Duane's Awareness Bracelet is hand-knotted and linked using metallic pale green leather and brass accents with lobster clasp, adjustable between 6.5" and 7".  

      

    We feel very thankful at Knotty Origami to have been asked by a dear friend to be a part of her family's journey toward healing.

     

    Thank you. 

     

    Happiest of New Years To You All!
    ~  Tricia

     

     

     

     

     

  • Comments on this post (20 comments)

    • Johanna Cohan says…

      Hello

      I have Duane’s syndrome. I am interested in getting a bracelet. I see that you may have them in black. Is this still possible?

      Thanks

      on March 12, 2019

    • Traci Fultz says…

      My now 23 yr old daughter was diagnosed with Duane Syndrome at less than a year old she is a one in 10 million case as she has Duane syndrome not just in one eye but both. I am proud to say she has never let her lack of peripheral vision from preventing her from doing anything from dance to drivong she has managed it all. She loves this bracelet and I am interested in aquiring one for her.

      on March 12, 2019

    • Jazzie says…

      I have Duane’s Syndrome as well. Ithe been rough, but I have found many ways to deal with this condition.

      on December 17, 2015

    • Knotty Origami says…

      Hello, Annie!

      I can make a variation of this bracelet in black. You would place an order for one of these, but leave a note at checkout for the color change to black. Thanks for your interest!

      on February 06, 2015

    • Annie says…

      Hi! My boy has Duane’s as well. I love your bracelet but have nothing green. Does the band come in black by chance?

      on February 06, 2015

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