lost my beautiful daughter Katie.

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Hi Roben

I can't imagine how you must feel, I recently lost my dear mum, but to lose a child must be horrific!

I have had my epilepsy since 1986, diagnosed at age 23, it is an extremely debilitating and stressful condition, I try to keep smiling, and stay positive, the folks here on CWE have been a tremendous help, and I'm sure you will get the same understanding and support here too. All the very best to you, I'm sure your daughter is where my mum is, in a safe happy place watching over us, I just know we all get to meet up again one day!

Love & Best Wishes

Elaine x
 
I am so sorry. My heart does not even know what to say. You have probably thought of it all. I hope you sleep well tonight and have a good reason to smile tomorrow. I am deeply sorry for your great loss. Teresa
 
I cannot imagine having to go through any of that! I don't know how I would be able to manage living with watching my daughter go through that.
I am truly sorry and my condolences go out to you and your son.
 
Have you ever heard of Caring for Kids? This was started because Diane who Started it had 2 daughters she adopted that died from epilepsy. I watch my boy like a hawke. He told me today that he is afraid of dying from epilepsy. We cried together. I am so sorry for your heart. I just don't understand why we only get to love a while. Please accept all my love and sorrow. And in my heart I will also celebrate her .
 
My heart breaks for your loss of Katie. I, too, lost my daughter on Nov.6th this year. I did have her for 39 years, but???????? I was not even aware that a seizure could kill you, Dr. never told me that. Please try not to beat yourself up for the bath, she could have fallen into someones pool or ? We all do this, I know. Jackie
 
My heart was breaking as I read this.

A child passing before they even have a chance to live, just isn't fair.(tears) Neither is it fair for when an adult or young adult passes because of E.

My heart goes out to all of you that have lost loved ones' because of E.
 
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Have you ever heard of Caring for Kids? This was started because Diane who Started it had 2 daughters she adopted that died from epilepsy. I watch my boy like a hawke. He told me today that he is afraid of dying from epilepsy. We cried together. I am so sorry for your heart. I just don't understand why we only get to love a while. Please accept all my love and sorrow. And in my heart I will also celebrate her .

I feel the same way your son does. Even though, apart from a few instances, I have been pretty much seizure-free for the last 20+yrs.

Not only am I scared of dying courtesy of E, I think about, not only the people who know nothing about how to react to a seizure making sure the person doesn't injure themselves. But also the people who think we are freaks or weirdos' for having seizures.
 
I am heart broken to read this story. If you still follow the forum please know that after years gone by Katies story still touches peoples hearts. Xoxo
 
I am extremely sorry for you loss, I hope things only get bet better from here
 
I am very sorry, what can I honestly say except bueaty is everlasting.
 
I think you would be a great advocate for E. I m sorry about what has happened.
When I read this It made me feel like I should be more careful. For example one day I was home taking a shower/bath and I had a seizure and my boyfriend wa home and he saved me. Now we are happily married and he tells me never to take a bath and if I want to he will sit in the room with me.
It's kinda scary now readin this that you need to be careful with the meds they give you. I just went to the nero doc today and he just uped my dose on my Keppra. And now I m scared.
Also, welcome to CWE I hope you have a good time with the site and make losts of good friends. With love Julianne Logefeil
 
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