Kylie’s STory
Kylie was diagnosed with Williams Syndrome when she was 2 months old. Williams Syndrome is a rare genetic disorder, present at birth, characterized by medical issues that can affect every major organ system in the body.
It is caused by a microdeletion of approximately 25-27 genes along one arm of chromosome 7, the main gene deletion of which is Elastin. Elastin is the protein in our bodies which forms our vessels and allows for the free flow of blood throughout our systems.
Of the common medical issues, most concerning are those involved in cardiovascular disease and sudden cardiac arrest. Kylie’s heart condition is what led us to her diagnosis. Those living with WS are also faced with challenges that come with developmental & intellectual delays, learning disabilities, anxiety and beyond
We are very grateful for Kylie’s current health and developmental progress. Kylie is regularly monitored by 8 specialists and receives 6 hours of therapy a week and we benefit greatly from the advances that have been made in the medical and therapeutic community to understand WS.
WAnt to represent kylie’s krew AND SUPPORT THE WILLIAMS SYNDROME ASSOCIATION?
Sunday, June 2, 2024
9AM - 1PM
Your support of the Williams Syndrome Association helps fund critical research, provide resources for educational and medical needs, develop programs to support challenges from early childhood into adulthood, and much more.
When we first received Kylie's diagnosis, the Williams Syndrome Association was our guiding light through those initial months of fear and uncertainty. We're now committed to giving Kylie and others with Williams Syndrome the best possible resources for a healthy, happy and purposeful life. We could not do it without you!
Thanks for supporting Kylie’s krew!
Want to connect?
Kylieskrewnj@GMAIL.com
