Caydence's CDLK5 journey
Caydence's CDLK5 journeyHawke's Bay
MY NAME IS CAYDENCE AND I HAVE CDKL5 DISORDER
Hi, I am Caydence Rewi and am 27months old. At 8 weeks old I had my first seizure and have had hundreds of seizures since. At first I was diagonosed with epilepsy. I wasn't hitting milestones like other children my age and to this day I still cannot crawl or walk. I cannot talk but have the cutest laugh out. I dont sleep much and at times and can be up for 24 hours. I love playing and having lots of hugs. I love when people talk to me but of course I have bad days too.
I have just recenlty been diagonosed with CDKL5. CDKL5 is a rare X-linked genetic disorder. The CDKL5 gene provides instructions for making a protein that is essential for normal brain development. Now I know why I cannot and will possibly not be able to develop normally like other children.
My family call me their special angel as there are only 8 other children like me in NZ and only 800 in the world. The unfortunate side of this is not too many people know how to treat me and in particular how to stop these violent seizures that I get.
To help my family and me have a so called normal life I need to have a special diet which is high in protein, therapy to train my brain and for muscle development and a living environment that can support my disability as I get older.
I need to visit a specialised clinic in Adelaide and may at some stage have to go to a clinic in Boston which is in America. These places have Doctors who specialise in my disorder.
Even though I will never be normal and even though I may never walk or talk I know I bring joy to all of those that know me.
I hope that helps you to understand a little about my disorder, You can research more about my symptons on the CDKL5 website. www.cdkl5.com
Nikki Filipo's involvement (page creator)
I am a friend of the family and want to see this beautiful whanau get the treatment they need and deserve.
Use of funds
Funds will be used for
Timmermans intensive therapy in Australia
Cost of a high protein diet
Cost of travelling to and from funded & non funded therapy sessions
Therapy tools & equipment
Alterations around the home
Other page links
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This page was created on 9 Sep 2018 and closed on 10 Dec 2018.