Kevin "Kasper" Clotfelter

It has upset me as well Jason. I keep thinking that if a doctor dropped the ball here that they need to be held accountable. Have you learned any more about how this happened?

Hi everyone... Debilitated sounds a lot like my brother. Kasper does as well, which is his nickname. Kev is how I refer to him. As Jason has shared, Kevin passed away on July 8th from heart failure due to complications from his Crohn's disease and all of the other conditions it led to. I saw something about this website on his Memorial page (http://www.facebook.com/event.php?eid=134400559923915) and started a little search to see if I can find any posts that sound like Kevin. As I searched through the pages in the forum Debilitated is without a doubt, Kev. I reached out to Jason a short while after it happened because Kevin had mentioned Jason to me before and had also mentioned the fund that he was working on with Jason. Thank you all for your kind posts about my brother, he was way too young and way to bright to have to suffer from an awful disease as he did.. Thank you for you sympathy and love.. my family greatly appreciates it.
Now, to answer some of your questions about the complicity of the disease and his medications, and action taken, we did not have an autopsy performed. There are a couple reasons for this: 1) Kevin NEVER wanted to have surgery, and we did not feel that we could let him be opened up and cut up as his body rest in eternal peace. 2) As a grieving family we could not bare to wait any longer before letting him finally be put to rest... and I have never seen him sleep so peacefully as I did on the day of his memorial service. The fact that we did not have an autopsy performed does not mean that we are not concerned with what happened.. I have always felt that Kevin was on WAYY too many meds at a time as the pain killers were extremely strong for such a frail and fragile body. I also was concerned about his heart condition and always thought that he was causing himself so much stress and anxiety (and rightfully so) and he was just so malnourished. My best friend's brother just passed away as well, also from heart failure, but he OD'd on heroin. Now I am not saying that the intentions were the same (recreation/ addiction in Steve's case, and meds for such severe pain due to Kevin's condition) though the overdose on meds obviously could cause and has caused heart failure. I am not a doctor and God has blessed me with a relatively healthy body so I do not know much about the meds that Kevin was on or that you all are on and I would really like to know more. I used to refer to one of his doctors as his drug dealer, because she has literally told him to to take his drugs, eat and pray, which may be good advice if you were in remission but he was not. I do not want to blame any of the doctors, and some of them I have met and talked to. The truth is most, if not all, told him that surgery was necessary. Kevin refused and wanted to try something new each time, this is his own decision here. Though, the doctors do not have to proscribe anything that they do not think he should take.
I guess I am just so confused and thinking so much, not able to sleep at night, or do things during the day. I feel like there is a reason that I contacted and found Jason to inform him of the death though we have never spoken before and I feel like there is a reason that I found you all.. It is not about money or anything of that matter and that is another reason why we did not want to go after Kev's doctors, but rather than for financial gain I would hate to see another young life wasted if the doctors were at fault. If anyone has any answers or would like to ask me any questions please feel free to reply and ask. I would love to be at peace myself and I would love to eventually set up a foundation in Kevin's honor, but first I would like a lot of these questions to be answered so that eventually I could fight doctors that hurt patients more than they help.

Kevin is one of five siblings, we are all a year apart except for the youngest she is 2 years apart. I am 23 Kevin is my little bro at 22. We are extremely close to our cousins who live in the same town and are the same age. My parents, grandparents, aunts and uncles, cousins and siblings were all by Kevin's side the whole way.. His death is a complete shock to all of us, we always thought that he would get better... When it got real bad I would tell him that it can't get much worse than this, only goes up from here! Death was never an option, now it is a reality and as time heals,so does piece of mind.
In his honor I would like to help set up a foundation and have asked Jason for advice, but would also like to reach out to you all if you have any ideas... I always knew that his disease left him feeling lonely and depressed when the family was not able to be around and that he felt that he led a poor quality of life.. it wasn't fair and others should not have to feel this way. I also would like to help fund research for debilitating diseases and help the people who suffer from them. I have friends and family that work in non profit, but it sounds like a lot of you knew my brother and may have some ideas for a foundation. I currently am helping with the Crohn's and Colitis Foundation with advocacy work and fundraising but I want to do something in Kevin's name.. something that he himself would have started.
Thank you all so much for being there to answer his questions and send hugs. He never wanted to be alone, and when we were at work or school or just out it is such a relief to know that because of his support here he wasn't alone. God bless you all for that, you are all angels.. especially you Jason.

Sincerely,
with Love,
Tiffany

Just a few ideas off the top of my head:

1. Have an annual golf scramble, poker run, etc. and donate the proceeds to an existing organization like CCFA, HealingWell.com, etc.

2. Start your own scholarship fund and provide financial support to Crohnies who are wanting to return to school but can't afford it. 

3. Contact/work with a GI hospital to either donate $ to Crohn's research or provide funding to help IBD patients who can't pay their hospital bills.  A lot of places will let you donate money for certain uses only.

I'll see if I can come up with anything else.   

Much love to you Mikec! I have no words that will feel your void, as a parent, I can't even imagine your pain. God Bless you and your family!

so very sad, I only chatted with him in chat room via hw. very hard reality check. he seemed like a good kid, very sick, I could tell just by chat room. my condolences to his family. this is a tough one right now for all of us at hw. so young he was, when he told me how tall he was and how much he weighed, I felt so bad for him.

Tiffany, thank you for reaching out. Kevin was always helping others, and I now see it runs in the family. I'm so sorry for the loss of your brother, and hope you will be able to get all your questions answered and find peace. 

Mike, your son struck me as generous, intelligent, inquisitive, and courageous. No parent should have to bear the loss of a child. Our thoughts and prayers are with you.

Your son/brother and I started methotrexate at the same time... I always remember telling him that maybe it would help him so much that we'd have to shorted his name to "debil" instead because debilitated would no longer fit him... (I didn't realize at the time he was the same as Kasper.) I just want to give all my sympathy to you. His death has upset many of us and I cannot imagine how much pain you are in - his family. He touched many of us... And it feels too unfair for words. I could not believe it when I read...

sorry for the loss .. and our loss...

   i understand the family decision to not autopsy, and obviously its too late but for others please consider scientific donation . they need us to help figure this out. , again sorry for the loss.

Post Edited (randynoguts) : 8/18/2010 5:06:28 AM (GMT-6)

I just logged on I to have been sick and out of the loop for a while this is really devasting to hear about Kevin I'm so sorry for your loss he was full of helpful advice to all he knew,he will be sadly missed by all his crohn's friends,this is a great loss to all and I hope his family can find some peace...

Post Edited By Moderator (Nanners) : 2/28/2011 7:38:48 AM (GMT-7)

Did Kevin ever tell us he wrote a book? I did a search on him and apparently he did  it's called "Who writes a book while they're angry".  I'm kind of intrigued by this.

Thank you everybody for your kind words. It is amazing how some way or another my family is finding this page on their own. I myself just had a horrible dream last night that made me do some remembering and searches. I also would like to thank every which one of you who has been here for him throughout the years, and now. If you feel like you knew him, you DID. Kevin was the type that put his actual voice in everything he wrote. I of course read his book and it is absolutely amazing that as I read it, it was like literally him talking. He says it like it is. To the few of you that feel Kevin 'knew' i believe you're absolutely correct. Kevin is unique as some of you came to find out. As I mentioned at the service, and I meant every part of it. The world wasn't ready for Kevin's ambition and or his heart. If Kevin wanted something, I guarantee he got it. He even wrote the Chicago Blackhawks a letter asking to give me a shot. Kevin NEVER sold himself short. 22- published a book? Exactly. Kevin knew it was coming. He literally told every one of us in a unique way. He basically painted a picture for us with the words. But they did not slap us hard enough in the face to realize death was an option! Kevin, as sick as he was and home bound had more money than any one of my relatives. He was the biggest hustler, now don't get me wrong, Kevin was only truly home bound for the last few months. Before that he was the realist man on the streets. Kevin knew how to get what he wanted. He knew the stock market as well as Kramer (who Kevin also appeared as voice on the show) the sky is literally the limit to have any thoughts on what Kevin was capable of if healthy. His generosity and will power to never sell him self short would probably have raised lots of money to help people. He use to just toss money to my mom because it was extra in his pocket. Jason could vouch for how hard Kevin worked to get disability, food stamps, Medi care. Again, if he wanted something, he got it. Can only take what you can control. Health wasn't tangible. However, he is now looking over all of us playing with his best friend Rocco(his dog who passed 3 months before) running around like he couldn't no longer do here. Kevin lived a short and not too filled life but in high school and jr high. People respected him as you would respect an old Italian mobster not because Kevin was a giant. But because his brains. He has so many people wondering what happened that when you type Kevin Clotfelter in Google it auto suggests death. He was not alone, thanks guys.

His brother,
Keith