Hello,

Twenty one years ago my life completely changed when I gave birth to my third beautiful baby daughter, Beth. As she was placed into an incubator instead of my arms, it quickly became apparent that Beth would take us on a different journey. In the absence of a diagnosis, my family and I simply described her as; Special.

After twenty-one years of wondering, waiting and searching, we have finally been given a reason as to why our girl is so special; Koolen-De Vries Syndrome (“KDVS”).

I wish to use this blog to look back and look forward but most of all, reach out to other parents who find themselves on this journey.