Kiera's Road with CDKL-5: March 2014

I haven't updated for a few years but I plan to do that very soon. We have had some life changing events with Kiera and her health over the past year and I want to get everything right when I post next.

This is my story about a CDKL-5 deletion (Xp22.13) and how it affects my daughter

Welcome, and thank you for reading.

My daughter Kiera, was diagnosed with Cyclin Dependent Kinase Like -5 (CDKL-5)May of 2008. This is an X linked disorder but there are a handfull of boys that have been identified to date (2011) Currently there are about 200 families in the whole world that have been identified with CDKL-5. It is a very devastating disorder, it leaves the children with many physical, mental, and medical disabilities.This disorder was only discovered by the medical field in the late 2004. This disorder is still so new and not fully understood by medical professionals so there is still so much to learn before finding a cure. Kiera is one of the oldest individuals that have been diagnosed thus far. Kiera was also included in a case study with two other families who's deletions are close to her deletion. Our hope is that this will bring more answers and maybe even a cure for the future children and families.

Tuesday, March 25, 2014

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