Saba Kamaras, co-founder of Spoonie Threads, was first drawn to designing adaptive clothing when her niece Eva was born. Eva was diagnosed with Walker-Warburg Syndrome (WWS), a rare genetic disease associated with Congenital Muscular Dystrophy. It is characterized by abnormalities of the muscles, brain and eyes. Children with this diagnosis are given a challenging prognosis and a short life expectancy.
Saba recalls, "When my niece Eva was born, it was difficult for her to wear any clothing because of all the lines and sensors attached to her in the NICU. When Eva got her g-tube, I saw how often her parents had to undress her to access the tube. I wondered why the hospital didn’t have a onesie with openings for tubes. At the time, I was transitioning away from traditional fashion design and seeking a design role with more purpose. I started doing some research on g-tube friendly baby clothes and found the world of adaptive design. From that time on, adaptive design became a passion of mine that keeps growing to this day. I hope I can honor Eva’s memory with the work we are doing at Spoonie Threads."
After Eva passed in July 2017, her parents were inspired by the beautiful butterflies that would come to visit them that summer. The butterfly was a reminder to them that Eva is at peace and free of this disease. In their grief, they wanted to find a way to give back directly to Walker-Warburg Syndrome (WWS) families with a positive experience during a difficult time. They remembered how much fun they had making a “bucket list” with Eva, sharing memories together and wanted to pay that forward.
The Junejas wrote "During our time with Eva, we were determined to make life as normal as possible. With the help of our family and friends, she was able to experience many fun things. She took her first boat ride, hopped on a plane for a family beach vacation, rode a horse, attended preschool for a day, and most importantly felt love every day. Even on hard days, Eva never gave up! She gave us the strength to keep moving, and we enjoyed every minute with her. Eva loved to have books read to her, preferred listening to “Oldies” music and really looked forward to bath time every night. Eva did not let her diagnosis define her and she left this world inspiring many to truly LIVE. We miss her terribly, but she is all around us in the beautiful butterflies that come to us often. We promised to make her proud, and we feel privileged to share her love and light with others".
Since October of 2020, they have partnered with the National Organization for Rare Disorders (NORD®), to offer a patient assistance program providing fun experiences to other WWS families. They are excited to announce that they have expanded the program to include children under the age of five with a life-limiting rare diagnosis. For more information and to apply to this program, please visit the Assistance Programs page on NORD®’s website by clicking the link here.
Spoonie Threads hopes to help spread awareness of WWS and Eva’s Butterfly Wishes® to provide assistance to families. We understand some experiences would not be possible without a program like this to help with a medically complex child.
Saba Kamaras is a board member of the Eva Juneja Foundation, a 501(c)(3) nonprofit organization.