I copied my post on the EFA and wanted to share with you all:

We were at the Make A Wish Golf Tournament Fund Raising in Priest Lake Idaho. We were letting people chat with an ''actual'' Wish family. To show all the people that donate what it really goes for.

Near the end of the tournament Kevin was introduced. Kevin has been seizing a lot more lately and had just had a few more. If you know Kevin like I do.... you usually can not get him to stop talking... (love that, very passionate about what he talks about). They told all the people about what Kevin has (epilepsy or Doose Syndrome) Kevin spoke few words about his wish trip and came to me and sat down (amazed all that knew him, was expecting 1/2 hour chat and got 3 seconds).

A little bit later, a gentleman came to where Kevin and I were sitting. He introduced himself as "Rich". He homed in on Kevin. Sat down near him and told him that yes he was a lot older, he has epilepsy too. He gave the most impassioned, up lifting, and heartfelt ''pep'' talk to Kevin and hubby and I.

I about cried right then and there. He told Kevin that he could do anything he wanted and to not let the seizures stop him. He told Kevin that even though he had had a seizure that morning, he still played in the tournament. He chatted with us for 45 minutes. He chatted with us about growing up with seizures, the stigma, and working at different jobs with seizures. And if we ever wanted to just talk about what Kevin CAN do, to call him. He spoke to hubby and I about fighting for Kevin, and how to never stop. That WE were to key to Kevin's future.....

Apparently he went and asked one of the Make A Wish coordinator where we were, hubby was standing right behind him and brought him over to us, not knowing why he wanted to talk to us.

He spoke so well to Kevin, and Kevin just sat there and soaked it all in. He was so uplifting and I probably thanked him 100 times over and over. He gave me his business card and I am going to have Kevin send him a special thank you card.

There are wonderful people out there.


Just a little uplifting story that made me smile!!!

What an incredible experience~

I bet that was amazing for all three of you.

That is a wonderful story!! Thank you for sharing it with us. Your Kevin reminds me of my stepson, Nicholas. Nick has Cystic Fibrosis. He is 8 years old an he is fairly small....but he is mighty!! He has physio and pep therapy each day. He cannot eat anything other than fruit without taking digestive enzymes with it. But this child is absolutely amazing! He plays soccer...it is houseleague right now but is being looked at for a rep team. He is incredible. He just does not let the CF stop him. I remember one day not long ago he asked why god gave him this disease..(his actual words!) I think we made him realize that we beleive that he has CF to show other kids that they do not need to let the disease stop them from doing what they love...and that other parents can learn from his that they need to let their kids do the things thaat they love to do. I told him that he could say...I can't!!- but instead he says I will!..and he does and I admire him for it. He is such an inspiration!!!

Kevin is a amazing young man.

But that goes without saying. He has one amazing mom.

She has taught him how to be a spokesman for everything he does.

Cyberonics, Epilepsy and Make a wish. He does it all very well.

Its so nice to see that with all the seizures he has daily that he
can still function so well.

And that even with all the problems that Missy has had to endure
from some people on various sites that she can still have a positive
attitude and give so willingly to others.

Missy don't ever let the people that try to bring you down with the
negative comments, the accusations of doing wrongful things let
you change who you are.

One strong lady.

Donna

Thank you all.


We have been having a bit of a rough time. Kevin's seizure count per day is going up (15 now). Epi told us we were lucky that Kevin's seizures are very short/quick but that can change at any moment (sigh).

Kevin's short term memory is going, going, gone..... It is scary watching your once highly intelligent child wither away....

Dorrie, your son and my son SHOULD meet, they could be super heroes... They could probably talk off their own ears to each other.

Donna, what can I say? You were the one that pulled me back to reality with that wicked witch that almost took my life in the EFA. And have been a very dear friend through some not so nice times with those other sites... great minds always think alike!!!

I try to stay positive, really I think the ''meanest'' thing I have ever posted to someone was ''get over it" and of course it was thrown back in my face (several times) soooo....

After that nasty suicide prompt from that icky person I try to post positive and helpful as possible... some days it is harder (like lately).

I really hate epilepsy, it has taken from my son way too much

((Missy))

It breaks my heart to hear that Kevin is going through such a rough time, I always have looked at you guys in amazement-even though we have disagreed in the past about stuff. It doesn't change how amazing Kevin is, and you too.

Are regressions part of DOOSE?

We just had Ri's IEP and it really hurt having to back her goals WAY down. She has never met a single goal they made, and at the time they were attainable. Now well, we are hoping for her to just get 1/2 the alphabet down by the end of the year. It is easier to deal with, or maybe understand is a better word since we were told she did have Lennox Gastaut, just Epilepsy didn't cut it. I know several adults with Epilepsy who are just the same as any of us, smart, have jobs ect... It didn't make sense until we were told about the lennox gastaut.

Not that any of it is ever "easy" to take, but at least we know a little better what to expect, it has been a lot easier for me to know that to expect her to have complete seizure control is not possible, I mean it still sucks on days like today, her birthday and she has spent 80% of the day on the couch, either seizing or post ictial. She has gotten up and played a little between...

Anyway, I just wanted to share a ......

Dorrie

You must have been posting your son's story at the same time I was posting
to Missy. But he sounds as much a inspiration as Missy's Kevin.

My Derrick is 16 but he is quite a young man, I like to say he is a teen without the teen attitude. Which is a statement that not many mom's can ever make. He has the best attitude and is always there to help me.

And I have to admit he is a great advocate for epilepsy. He has a fantastic video for bullying and it shows just how much the school and the kids around him have down for him.

Thanks for the kind words Missy. You know I'd do it all over again.

Donna

That's so great.

I like it when people who really know what's going on speak with me. It's a whole different dynamic. Glad you had such a great experience.

Way to go for Derrick!! Are these kids not amazing!!! I know that sometimes people cannot help but be held back by their health problems but it certainly is wonderful to see that these kids are doing something different with their lives! I do beleive it has much to do with their parents.....my hubby for example is a dedicated, wonderful, loving parent and I admire him so much for that. Obviously Kevin and Derrick are lucky in the same way! Kudos to you ladies Dorrie