Content for Families, Carers and Professionals

Karina and Beth - "A Standing Ovation"

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I am a sibling of a child with cdkl5. I have been since I was 5 years old, almost 10 years now.  Due to this, over the course of my life I have had many lows but ultimately highs as I have gotten to know the best little person in the world my little sister Bethany Wilson, and this is her story but for a change, this is from my point of view.

I remember so vividly finding out I was going to have another sibling I was overjoyed with excitement. Little 5-year-old me was running around jumping on the furniture with my 3-year-old Brother who didn’t have a clue what was going on. The smile didn’t leave my face and I was waiting for my little sibling to arrive praying it would be a girl and finally she arrived. I remember her tiny hands that could fit around one of my fingers. However, things never quite go as planned. As less than 6 weeks later, she was ripped away from me and she took my Mum and Dad with her. I remember standing at the top of the stairs asking my Mum if I’d ever see my baby sister again. Hospital appointment after hospital appointment my parents went through, my brother and I were told to pack a suitcase as we were going to Italy which I later found out was because my Sister was in critical condition and needed medical attention immediately and the only place my parents could find a diagnosis was Italy. Once we arrived in Italy I was enrolled in a international school out there and it was obvious we were staying out there longer than any of us had planned. The days out in Italy were long as a family of 5 plus my Nan (who was our rock) were staying in a one-bedroom apartment. It consisted of my 3 year-old Brother rushing around the room demanding that his doll was having a seizure as that’s what both of our lives had become. Just under three months later we came home with a diagnosis of CDKL5 and a crazy experience we then continued with our somewhat normal lives.

Back to reality now and I’m an ordinary 14-year-old girl making her way through her GCSE’s. It may have been 8 years since my little Sister was born but I still get this anger bubbling up inside of me whenever I go out with my sister and everyone’s heads turn our way then they try to look away but fail and look back again wondering what is wrong with her, kids are the worst they think the same thoughts as adults when they meet Bethany they just can’t hide it as well. I still feel a part of me die every time I see my baby Sister having a seizure. I still try to remind her I’d switch places if I could to avoid her going through any pain. I would still give anything to hear the words “I love you” come out of her mouth and I still feel as though I have lost my privacy to the many carer’s who come through our home. However, I will still protect my baby Sister at all costs because at the end of the day I love her with all my heart. 

All in all, I may have to deal with all the problems stated and a lot more daily as does anyone connected in any way to a child connected to CDKL5 and at times it is next to impossible to be positive. However, I feel that having a sibling with CDKL5 is the best thing that has ever happened to me as I now see the world through the eyes of possibility and I have my wonderful family to thank for that. I once read somewhere that everyone deserves a standing ovation at least once in their lives, and I couldn’t agree more as my entire family deserves one. My Dad deserves one for constantly being the peacekeeper and always making us laugh, my Brother needs one for putting up with everything and always being there for me, my Mum definitely deserves one for never giving up and my baby Sister Bethany Rose Wilson deserves a standing ovation most of all for lighting up a room just by being in it and for inspiring everyone who’s ever met her. Because CDKL5 you can knock my family down but you can’t keep us down.


Karina Wilson, Sister to Bethany Rose


  cdkl5, sibling, carers, seizures