The Kabuki Gathering is a Texas nonprofit organization.
My name is Emily Benton. Our Kabuki journey began when my daughter, Jolee, was diagnosed in 2015, a few months before her first birthday. This is when we became a part of the Kabuki family and a fire was lit to begin using our voices to advocate for all of those affected by Kabuki Syndrome. It was then that I knew I wanted to meet and connect with many other Kabuki families and resources that would benefit our children for generations to come. The connections with other Kabuki children and professionals have proven to be invaluable. In 2015, the annual Texas Kabuki Gathering was born.
- Emily Benton, Director and Founder
My daughter Anna was born in 2002 but was not diagnosed with Kabuki Syndrome until she was 15 months old. We were told at the time that there were about 450 people diagnosed in the USA. We honestly felt that we were alone on our journey. In 2015, we got a message from Emily Benton which said that a small group of families in Texas were going to meet for the day. My family was very anxious at the thought of meeting other families affected by Kabuki. Were we ready for this? We had spent so long on our own. After a lot of thought, we decided to go and the experience changed our lives forever. Meeting other families that understand our life and for our daughter to meet other children just like her was beyond what I could have imagined, as was our son getting to meet other Kabuki siblings. Now to be a part of an organization that brings this experience to other families and show them that they are not alone is a dream come true.
- Missy Smedley, Director
Our daughter Gaby was born in 2015 and diagnosed with Kabuki Syndrome three months later after doctor’s stumbled onto a minor condition with her heart. For a few years our family took a deep, unexpected dive into the world of chronic reflux, vision loss, hearing loss, hypotonia, and all of the specialists and therapists that come with it. We were actually introduced to The Kabuki Gathering by Gaby’s grandparents who attended in our place during Gaby’s first year, because we were in no condition to present ourselves to other humans, let alone travel. Since then TKG has become a mainstay for our entire family – including Gaby’s sister Hannah – every year, because we have come to know how important these relationships are. We have also chosen to become more involved in the Gathering itself, with a simple goal of helping to bring families together.
- Chris and Elisa Lange, Directors
