Tuesday, 1 May 2012

In memory of Charlie.

My blog today is about SUDEP- Sudden Unexpected Death in Epilepsy.

Reality check time. Every one is moaning about what they are not getting, how little they have, how much more others have, how miserable the weather is etc.

I am writing this blog in memory of a ten year old little boy who died 29 weeks ago. His name was Charlie Farley. Below is a you tube clip dedicated to his memory, created by his parents who are trying to raise awareness of SUDEP. I also have to pay tribute to these parents because although they are my sisters friends, I do not personally know them, I can only imagine the inner strength they have had to find that I guess humans can only access when the chips are down.Please take a look.

SUDEP awareness dedicated to Charlie.

1.Every day 75 people in the UK are diagnosed with epilepsy.

2. Epilepsy is another unseen disability, very disabling and can not only effect you emotionally but can do physical harm and in some cases cause death.Epileptics do not carry vis-able items of disability like sticks or wheelchairs but many of them are likely to be as disabled in life as a man sat in his wheelchair. After all those with regular unmanageable grand mall Seizures can not be left alone so have independence stripped, can not go out shopping alone, can be socially isolated not only because of fits but because of how the person feels about themselves.

3.At least 1000 people die a year from Epileptic related deaths and 400 out of the 1000 deaths could be avoided.

4. One of the most shocking and sad facts is that SUDEP kills more people than cot death or aids combined.Yet we all know about Cot death and Aids but I had never heard of SUDEP before.

Most of us do not want to imagine but lets try, our smiling, lively and happy child goes to bed. You give him or her a kiss goodnight, you go in to their room the next day and they are lifeless.

Obviously growing up in hospital I have an awful lot of memories of children dying. I remember too many mothers screaming, too many parents smoking outside as ward rounds brought bad news. I think as a child I just repressed a lot of those memories because in the 80s children where not told what was going on by nurses, medics or Psychologists and medical staff and parents seemed to have no awareness that as children we were all taking it in, we would talk about in whispers in hydrotherapy and try to make sense of it. All most of us remember is just hearing pain in parents wailing.

 I feel very affected by any form of infant suffering or infant death. I had to blog about this today.

Please put aside a moment and look at the clip, learn something new, talk about it with friends or your facebook page but most of all feel lucky to have our children.

Thank you. x