The most precious commodity in the world is time. I have been keenly aware of time lately. The passage of time, not having enough time, time running out, time spent in pursuit of goals and accomplishments, time wasted, time wished for, wishing to go back in time, time...

February 20, 2018

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 hea...

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August 9, 2018

February 20, 2018

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CDKL5 Deficiency Disorder, Kiera's Hope Project, CDKL5 Research Collaborative, Hope, Time,Breathless, Rare, Advocacy

I'm busy working on my blog posts. Watch this space!

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