We’re Heather and Blake Bedinger. Parents to Helen and Ruthie, and founders of Extra Chromie Club.
Our desire for parenthood was realized on May 24, 2017 when we were blessed with a beautiful baby girl and named her Helen Bea. Blake went with her to the NICU, and when he returned with the nurse practitioner, Heather was told that our beautiful daughter “had characteristics consistent with Trisomy 21. Down syndrome. Do you know what that is?” What we anticipated to be a short, typical hospital stay, turned into a three week NICU stay at two hospitals where our girl fought infections, a blood disorder and eating difficulties. When we busted out of there with a tiny newborn, We knew our girl was going to change our world.
The first day we were home alone was glorious, just watching her be a baby and getting comfortable in our home. We can honestly say that we didn’t have many expectations before she was born because we didn’t know if she was a boy or girl, and we really thought she was a boy. Even still, we all have expectations for our children. We’ve been so lucky to meet families who have believed in the abilities of their kids with Down syndrome and helped them achieve major life goals. We aren’t sure what Helen is going to grow up and do, but we do know that she and her friends are fierce and they’re more alike than different, so we’ll encourage and push them to reach their goals, and shout their worth from the rooftops.
So, you’re wondering why Extra Chromie Club? We’re not trying to reinvent the wheel here. We want to financially support the already amazing Down syndrome organizations. We want our daughter, her peers and their families to feel supported, loved and to know belonging. Ultimately, we want to celebrate people with Down syndrome, their abilities and rewrite society’s view of our daughter and her friends.
Join us. Be part of the Extra Chromie Club.
To support the inclusion of individuals with Down syndrome in everyday life by providing a space for relationships to grow so everyone can experience the joy of living life together.
To change the perception on the capabilities of individuals with Down syndrome on a local, national and global level.
Showcase the capabilities of individuals with Down syndrome within our community and how they are more alike us than different.
Financially support organizations who are championing individuals with Down syndrome and opening doors for their inclusion.