Kiera's Road with CDKL-5

Wednesday, March 23, 2011

Tomorrow Kiera is going to have a test called a doppler ultrasound on her vains. We are hoping to find an answer for the extra edema on the right side. She has Genralized edema from an unknown cause but the localized edema is a bit worrisome.

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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.

Wednesday, March 23, 2011

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