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Gender	Female
Location	Minnesota, United States
Introduction	I am a mom of 2 adult children. My youngest, Kiera was born with a unknown disability that first presented with severe seizures. As she grew her disability advanced to other disabilities including, hypotonia (low tone)Kyphosis (S curve in her spine) CVI-blindness,Ristrictive Lung disease, inability to sit, crawl, stand and walk. She is nonverbal as well as at the age of 10 years old lost her ability to eat foods orally. May of 2008, we found her diagnosis~ she has a large deletion on the copy number of the X chromosome on the CDKL-5 Gene (Cyclin Dependendent Kinase Like 5) Keira is a 24 year old wonderful young lady now so finding her diagnosis after all the years not knowing was very bittersweet. After getting this diagnosis of CDKL-5, I have met a few more families who also have loved ones that have this disorder. A few of us mom's developed a non-profit organization in order to start research and fundraising, and intern bring more awarness to CDKL-5 disorders. At this point there is no cure for this devastating disorder. For more information about CDKL-5 please visit our new website at www.cdkl5.com Kiera and her family thank you!