There are moments in life that take your breath away. For me it was my daughters first seizure when she was 8 weeks old. And there are moments that change the course of your life in a single word, CDKL5, and a single sentence, "It's very, very rare!" When I heard these words, it was October 2008 and my precious daughter, Kiera, was almost three years old. I was stunned and devastated. It was an uncomfortable place to be, because as a physician I was used to finding solutions and looking to science and research for clues and direction. There was virtually no research being done on CDKL5, no understanding of what CDKL5 was, and no unifying organization to encourage and fundraise for research, for raising awareness or for helping families.
After meeting other CDKL5 parents online, I knew that we were capable of rallying together and making a difference for our children. Within a few short months, a small group of us came together to move mountains, and it was my honor to be founder and president of IFCR for 8 years. We accomplished so much, and research has hit a smooth stride with multiple research organizations now taking up the cause of CDKL5 Deficiency Disorder. But the one area that is very underrepresented in current research is the area of clinical therapies and treatments, and ways to improve our children’s lives today! So it is now my distinct privilege to serve as President and Founder of the CDKL5 Research Collaborative and Kiera’s Hope Project, and to help grow this organization into a force for good. I am even more focused and determined that CDKL5 will not define Kiera's life, and I have pledged my life to making hers better. When I look into Kiera's eyes every day, and hold her fragile and delicate hands, I am awed and humbled that she believes in me. This road has not been easy and there have been too many difficult days to number, but we refuse to accept the limitations that others place on us.
We are voyagers in uncharted waters and I am ready for the course of our lives to be changed once again. I am filled with hope and determination that the discoveries which lie ahead will take my breath away.