To celebrate and support people with Down syndrome and their families and to educate ourselves and others throughout Central and Eastern Kentucky.
The Down Syndrome Association of Central Kentucky (DSACK) proudly celebrates serving families and community members of Central Kentucky since 1993. DSACK was created by a small group of parents who envisioned better opportunities for their children with Down syndrome. Today that vision has expanded, and we are pleased to provide many programs and services to area families, schools and medical professionals.
In 2002, as DSACK became more visible in the community, the first Buddy Walk was organized. This was a huge success and has continued to be a tradition of DSACK families, not only as a fund-raising event but also as a day set aside to celebrate our loved ones. In 2013, we changed the name of our walk to Walk for Down Syndrome, and we hosted more than 2,000 walkers in downtown Lexington!
DSACK is a 501(c)(3) organization governed by a board of directors, which includes parents, educators, therapists and medical professionals. We have an executive director responsible for implementing our strategic plan and maintaining day-to-day operations. Our meeting minutes and monthly treasurer reports are open for review by anyone.
Our family's journey with Down syndrome began 17 years ago with a prenatal diagnosis for our daughter. We were given the diagnosis over the phone by a nurse. No information was offered or given. At that time, the Internet was not available, we knew of no other families who shared this diagnosis, and we did not know there was a support group in Lexington. We knew Emily would be born with a small hole in her heart, but all indications were that it was relatively small and would possibly close on its own.
On Dec. 5, 1997, Emily Faith was born. They showed me her beautiful face and whisked her away. As it turned out, her heart was much worse than expected. She was much too weak to nurse or take a bottle, and due to risk of infection, we could not take her anywhere except home and doctor visits. Extended family and friends were not able to hold our precious girl and would leave gifts and food on our front porch, as we could not ask them to come in. Going back to work for me became an impossibility, as we entered the world of feeding tubes, failure to thrive, cardiology appointments, emergency room visits and frequent overnight stays at the hospital. Emily did have open-heart surgery when she was 3 months old. We had many complications and spent many nights sleeping on the floor of the waiting room. Since that time, she has had more than 15 surgeries. Some have been major, some have been minor. She has had bilateral hip surgery and been in a full body cast twice.
Why do I tell you all of this? Because I want you to understand the journey that led me to become so passionate for individuals and families living with Down syndrome. I never want another family to feel isolated, scared and alone because they do not know about DSACK. It is important to me that the medical community knows we are here and ready to partner with the family that has just received a Down syndrome diagnosis. I want our schools to know that our children are bright and capable. Educators and medical professionals must know that we have the same dreams for our children as any other parent. I want our teenagers and young adults to be recognized by our communities as exceptional employees: loyal, hardworking and dependable. Before their precious child starts kindergarten, I want every mom and dad who have a sleepless night to know that they can call someone within this support group who will tell them that all will be well. Every parent who has tried every bottle and spent countless hours at speech therapy but still can’t get their baby to eat can be put in touch with a parent who has been through a similar experience. I don’t want our loved ones to be one of the statistics for loneliness and depression because they do not have a circle of friends as young adults. Lifelong friendships between families can begin at DSACK. The child struggling in school or parent struggling with their child’s IEP can find resources and experience here. The list goes on and on!
There is much to be done, and I can’t wait to see how it all unfolds as we forge new ground and claim bright futures for our loved ones.
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