General Chat

When the charity CRY (Cardiac risk in the young) and Sudden Adult death syndrome started, they stated that between 4-8 young people died each week from this silent killer, now their website states 12 people die eack week from this Silent Killer, and SAD is so appropriate. Twelve of our kids each week, that is 48 per month, 576 each year, we need to act upon this to lower the number, not sit back and watch it grow, please pm your MP for the government to take action and test all are kids. I recently had a reply from the house of commons, and they stated, one of the reasons they are against all children being tested is that it has no proof that this will actually save lifes, but the best bit was, and if they test positive their life insurance will go up, so bloody what, save our kids is what I say. Gillian Jennifer steps off her soap box, sorry XX..

Well they do the test in other countries coz they think it saves money in the long run ......

Good old England dragging their feet

My MP wrote to say he couldn't even put the suggestion forward because he is a Minister. The bottom of his letter headed note paper says
Your Voice in Parliament- doesn't shout as loud as I do! We want action now, not near to election time.

They should test in this country cos our kids have the same rights XX..

twelve innocent young people each and every week, can we really comprehend that, seems that we are, sorry, but I wish to save 12 people a week, it is our kids that I am talking about, yours and mine alike XX..

Did you write to Anne Begg the MP that my niece works for ?
Ros xx

I went to her web page Roz, but she cannot help outside of her constituency (if my memory serves me right) but I have emailed lots of people and although it is bringing the problem to their minds at the moment I believe we have about 120 MP's taking up the cause, and when you think how many MP's there are, that is a very small minority.

Keep up the fight , Gillian, Ros xxxxxxx

Anyone who wants to write to their MP, but doesn't know how to word it, Gillian has done a draft letter/email for me. I'm sure she won't mind me passing it onto you.

If you're interested please send me a pm.

I know quite a few people who are suspected to have died of this condition. You never know, the next victim may be someone close to you.

PS. the cry website is http://www.c-r-y.org.uk/

nudge

I had hoped in this day and age the number would have dropped not gone up, last year was between 4-8 a week, now they are saying 12. That is bad, this is getting worse, the number has risen by a third. We need to do something about us, but one lone voice will not be heard, we all need to shout together, please do not wait until it happens to one of yours, act now,. for children's sakes XX..

CRY the charity hold screening in various places over the year to find out when they are in your area just google CRY and click on screening, and you will get to know when you can get your kids tested.

nudge to remind you XX.. That was me that deleted I had added twice XX..

Jennifer, maybe it is not that the number has gone up but that by raising awareness the deaths are getting proper recognition. they may have just been put down to 'natural causes' before do you think?

It doesn't make it any better that there are all these deaths that could maybe be saved with a simple test though.

Ann
Glos

Yes, I guess you may be right, but either way Ann, that is 12 young people a week, and if they are over 35 I do not know what they put it down to? As once they reach 35 that is the limit to be classed as SADS, strange but true. XX..

Just letting you know that I did get this reply from my MP at 9.33 this morning (I only emailed him yesterday)

"Jon Trickett MP thanks you for this e-mail. He will be writing to the appropriate Government Minister to raise this issue and will let you see a copy of the response he receives."

Will let you know when I hear more from him.

Please email your MP. The more people made aware of this, the better.

Thank you Maggy, that is great, at least another MP is now aware, so come on peeps, see if your MP will answer. Just google your area for his e-mail addy
and lets save some kids from this silent killer. XX..

http://findyourmp.parliament.uk/commons/l/

Bless you Maggy, you always think of adding the addys. me - I always forget. Cannot get any easier peeps.

Lol... there's no excuse now