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The Epilepsy Support Group

Raising Awareness Through The Sharing Of Information


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SUDEP

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1SUDEP Empty SUDEP Mon Jan 18, 2010 8:12 pm

sharie1218



My name is Sharon and I am from California. I was wondering if there are any other families who have been affected by SUDEP out there.

2SUDEP Empty Re: SUDEP Tue Jan 26, 2010 5:08 am

JulieC



Hi I'm Julie, live in Cornwall UK with husband Jon, sons Zack 16, Jake 12, my daughter Kim 18, lives in Canada with her fiance. We lost our eldest daughter Hazel age 17 years November 5th 2007. The cause was SUDEP. Thinking of you & your family, take care luv Juliexx

3SUDEP Empty Re: SUDEP Mon Feb 01, 2010 7:07 am

bigbull

bigbull
Admin

hi and welcome to forums there is people on here who will help you though this bad time if you need us give us a shout

4SUDEP Empty Re: SUDEP Thu Jun 03, 2010 9:01 am

Dee07



Hi Sharon. SUDEP took my 41 year old daughter, Donna. Nov. 15, 2008.

It is insidious to find your child gone at any age. Although Since Donna's death here in the US especially in Texas from Baylor College great strides have been made in this field. We were very proud to be a part of this upon our daughters passing. In life she was a giving kid, I still call her my kid, and even in her death she was a positive influence in research.

No more can a Mom ask of her child.

It is a shame we have this club called SUDEP to belong too. But maybe in the near future there will be no more tears from parents and loved ones.

May God bless all who have suffered the indignity of SUDEP. We carry on and struggle each and every day. But through our grief we know peace. There are so many wonderful people to know and who can be helpful with a kind word of support. That's what we do is lean on each other and lend a helping shoulder to lean on.

So if anyone needs to lean, we're all here.

Dee<3

5SUDEP Empty Our daughter Jane died of SUDEP Tue Mar 27, 2012 9:14 am

andyswarbs



Hi,
As with many people we did not know about SUDEP until too late. Possibly there was nothing we could have done about it. Neverthless our daughter Jane died last year. Since then I have become increasingly active and a cornerstone of that is to build a blog forjane.co.uk to help spread awareness through social networking.

There is no doubt that the grief of losing my daughter indescribable, and equally inaction is impossible. Stopping gives time to think & reflect. It is those moments when pain steps in.

So, in my own way I hope to find people who share similar feelings and if together we can spread awareness more effectively then that can only be a good thing.

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