Hi, my name is Jerom Vervaeke – I was diagnosed with Kabuki Syndrome in 2008 and want to share my story with you.
On this blogwebsite I will share my endeavors with the world and my conquest to overcome the Kabuki Syndrome. Yes, you heard it right… “overcome” this syndrome!
My parents and I strongly believe that the medical advances of today and tomorrow will make it possible to one day cure my genetic disorder. Although this might sound like science fiction, we are convinced that a treatment is just a few years away!
By bringing together the right people with the right knowledge and by adding a little focus, dedication and commitment, breakthroughs in genetic sequencing (e.g. CRISPR) will soon be able to heal genetic disorders like Kabuki Syndrome. I want to be one of the kids that helps to bring all of the above together.
By sharing my life story, I hope to actively help bring knowledge and people together in order to do my bit in the quest to find a cure and to help people, the world over, to find hope and inspiration in my stories and adventures.
So if you, your child, friend or relative, are facing similar challenges as I am, and you are looking for hope and inspiration, follow this website and I will do my best to inspire you, to bring you hope and to shine a light on the dark path of genetic disorders!