25 Sep
  • By Heike
  • Cause in

“How to Stop a Thief”

It’s been with us a while now, this thief called CDKL5.  It’s been robbing our daughter Mia since she turned 51 days old.  She is now 5.  It lives with us and it does not leave. It takes and it takes and never stops.  It is relentless. One can never be prepared for this type […]

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setsize312220-carers-week
25 Sep
  • By Heike
  • Cause in

What is a Carer?

carers week It dawned on me this morning, as I had to get my daughter up for school, having completed the care plan……. meds, fed, dressed and me also, that when our kids are going through tough times it doesn’t just affect us. I should, at this time, point out this role is NOT normally […]

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ralph-hector
25 Sep
  • By Heike
  • Cause in

Ralph talks about new CDKL5 UK Funded Project

I am delighted to be writing my first blog for CDKL5 UK. Hopefully this will be the first of many over the coming months and years. I started working on CDKL5 research last year and I am delighted to be continuing this work. Thanks to this new funding from CDKL5 UK, in the coming year I […]

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setsize312220-img-6776
25 Sep
  • By Heike
  • Cause in

Finding a diagnosis of CDKL5 – A Dad’s Perspective

I am a Dad with a wife and three children, a mortgage and bills to pay. I have a fairly good job and a reasonable standard of living, the kids are provided for and we are able to go on family holidays. All sounds fairly normal so far, which is the way I thought my […]

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