Personal stories

  • By Heike
  • Cause in
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.
  • By Heike
  • Cause in
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.
  • By Heike
  • Cause in
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.