Sunday, 31 July 2011

Our first Post........welcome

     I was born on Thursday 26th August 2004 a lovely healthy weight of nine pounds seven ounzes with masses of  jet black curly hair and chubby cherub cheeks. Everybody exclaimed how beautiful I was and everything seemed perfect for awhile until I had my first seizure on Friday 13th in the bath of all places at 7 months old.  From there came 5 years of endless tests, hope and disapointment, until finally the news came on christmas eve (by letter) with the four letters and one number that will be embedded with me and my family forever, CDKL5.

    CDKL5 whats that? Precisely the thoughts that ran  through my mummy and daddys head.  My doctors had no real answers only that it was extremely rare, only 200 cases known worldwide apparently.  But what does this mean for me??.  There perceeded another year of searching, hope and ultimatley dispair until finally a website that would change everything for me and other little angels like me. the small sentence that changed our world for the better. Set up by other effected families, a place of knowledge, support and Hope. 

    For me living with CDKL5 can be hard . I have daily seizures which can effect me for hours before and after.  I cannot tell my mummy how much I love her and will never run or walk for that matter into my daddys arms.  I live a life of medication, doctors, physio’s and appointments which for me would be so much easier if my condition was more widely known about.  My hopes for the future are not your typical 6 year olds of princess’s and ballerina’s but for awareness and hope into a cure, if not for me for all the other CDKL5 angels that are out there as there are more and more each day.  Together we can make a difference.
Hi welcome to our Blog I am Gracies mum and we live in Cheshire England. We decided to create this blog to raise awareness for the devastating rare neurological disorder which is CDKL5 in the hope to educate and hopefully communicate what life is like for us. Gracie is our beautiful 6 year old soon to be 7 and at the moment our only child. We are in a very good place at the moment having struggled for years alone we now have a diagnoses and a brand new family and support network in the shape of the International Foundation for CDKL5 Research which can be found at and also on facebook. Things are looking up for us and so we would like to share that with you............