The Step Up For Down syndrome buddy walk hosted by the North Texas Partnership for Down syndrome was the first awareness/advocacy/Ds social event Heather and I (Blake) attended after the birth of Helen. The lasting impression it made was significant and has been a big spring board to the creation of the Extra Chromie Club. Throughout our very short journey since receiving Helen’s birth diagnosis we have felt the immense support from our family, friends, coworkers, acquaintances and even strangers. However, this event really opened our eyes to the impact Helen was having.
What started as a supportive text from Helen’s aunt Rachel where she coined the phrase “Extra Chromosome, Extra Adorable” turned into a t-shirt. Which turned into a fundraiser which lead to more than 50 of Helen’s admirers gathering in Sundance Square with hundreds of others to participate in a buddy walk designed to bring public awareness about Down syndrome. It was mind blowing to see the number of people willing to give up their money to buy a t-shirt and/or to give up their Sunday to physically show up and support a little girl who was barely five months old.
Just by sharing the opportunity with our friends on facebook we (mostly Heather) sold 120 t-shirts and raised more than $1,000. With a little more effort what could we achieve? Could we make a significant difference in the way our community embraces those with Ds? Could we support more organizations who are doing amazing things on a local, national and even international level? Heather and I decided we could and a little more than a year later Extra Chromie Club was born. While the Step Up For Down syndrome buddy walk was not an “official” Extra Chromie Club event it certainly played a role in our journey.