Kelly's Christmas Spinal Surgery

For: Kelly Koep
Organizer: Wendy Koep
of $10,000 goal
100% Complete
Raised by 77 donors
This fundraiser is closed. Thank you for your support!

The Story

We've reached our goal! You even took us above and beyond. Thank you all. Bless you and have a very Merry Christmas and Happy New Year. Subscribe and check the updates tab for continued updates on Kelly's surgery. Follow Kelly on her public page for current updates, photos, and videos at

My 27 year old daughter Kelly is the apple of my eye and anyone else that has met her.  When meeting her you would see that she is the sweetest, bravest and most caring young lady you could possibly ever meet.

Kelly suffers from a rare condition called Ehlers-Danlos Syndrome (Hyper mobility). This affects all her major joints, skin, blood vessels, and even internal organs. She has experienced serious dislocations of her jaw, ankles, spine, and much more. For the past 3 years, she has been suffering from many subluxations in the cervical spine, especially of her C1, C2 vertebrae. This has resulted in brainstem compression, spinal cord compression, and artery compression, causing extreme pain, nerve damage, and many neurological issues. Kelly is now confined to a neck brace and wheelchair and has to be under care 24/7 due to severe choking.

Unfortunately, Ehlers-Danlos Syndrome affects her connective tissue which makes it very difficult to perform surgery on her.  In fact, every surgeon we contacted in our state and surrounding states were unable to perform the type of surgery Kelly desperately needs.

The good news:

Fortunately there is a surgeon that has the skills to perform the surgery and has had great success in helping other patients suffering from the same disorder. Kelly has an opportunity to receive this very intensive and crucial surgery that will prove to be both beneficial and challenging. Kelly most certainly deserves this opportunity more than anyone I know.

The surgery is scheduled for Christmas Eve, but unfortunately we cannot afford to get there.  We have exhausted all of our resources and this is our last resort. As of this moment we are now reaching out and asking for any help we can get.

Please consider making a donation that will make this surgery possible, in doing so you will be helping Kelly her family. We will be eternally grateful for any size donation we receive.

This fundraiser is not an orginization and is not taxdecutable. This is a gift to Kelly's family for her/their medical and travel expenses including three trips across the counrty to see her surgeon. The first for a consultaion, the second for the surgery and the third for the post surgical visit. Keeping our fingers crossed that she wont need anymore anytime soon.

You can follow Kelly on Facebook at:

Or her blog page at:

Sending Checks...

If you would like to mail a check, you can do so and we will update your donation as an offline donation on this site. So anything you send us will show in the amount raised. 
You can make the check out to myself, Wendy Koep and mail it to:

Per Kelly's wishes:

Kelly would like to send a personal thank you card (drawn by her) out to everyone that donates. Feel free to email your name and address to [email protected]

Fundraiser Updates

Posted on January 23, 2014

Posted on January 23, 2014

For those of you that aren't already following Kelly's public facebook page, you can see all of her updates, photos, and videos on the progression of her surgery and condition. Just visit

Kelly is doing wonderfully. The surgery was a great success and her wounds are healing well. They had to do a little more surgery on her than orignially expected. They did a decompression on her where they cut a whole out of the bottom/back of her skull to allow better flow of fluids and release the pressure in her head. Also her skull was fused along with her c1/c2. Here is Kelly's latest update that she posted to her public facebook page:

"Hello everyone,
Many of you have been asking how I am doing and I've been slacking on my updates. I apologize for the delays. 

I am doing WONDERFULLY!!! I can't believe how much I have improved in just a month. I feel amazing. I can't believe I put the idea of surgery off for so long. My life has already changed for the better. I have been weening myself off of my neck brace. I now can go hours without it as long as I'm sitting in my chair. I can get up and walk around holding my head high. I can't explain to you how much better I feel without all that pressure in my head, sensitivity in my eyes and ears, and pain and swelling in my neck. I haven't had any paralysis since my surgery. My left arm and hand are already gaining strength and coordination back. I used to feel like I had constant brain fog. Like I was in another world. Almost like I was constantly being pulled or pushed down into the ground. I felt like walls and everything were always moving around me, but not anymore. I haven't passed out and I have only had one migraine since the surgery.

Here's the thing, there were so many horrible symptoms that I was dealing with 24/7. A lot of them are unexplainable, so it was easier to just explain everything as "pain". I get people asking me all the time if my pain is better, but I wish I could put into words how much more there is than pain. Yes, I was in extreme pain, but I have always been in pain and will continue to be in pain my entire life. I have a severe case of Ehlers-Danlos Syndrome Hypermobility, so pain is a part of my normal life. Dealing with just pain was the easy part. It's all the other symptoms that made my life so hard to live. A huge list of hard to describe symptoms. Yes, the additional pain was a part of it, but losing control of my own body was much worse than pain. I have dislocated almost everything in my body, but that is nothing compared to constant brain/spine damage.

I felt immediate relief of pressure in my head after the surgery. Lying in the hospital I was in so much pain from the surgery it's self. Yet, I felt better than I have in years. So if I feel better just after a major surgery like that, maybe you can imagine how horrible I felt prior to the surgery.

As for me right now, my wounds are healing very well. My posture is better and my neck is straighter. No, my neck doesn't hold it's self up. It wasn't a magical surgery. That's why I need to build my muscles again with PT. I would be walking more right now for exercise and strength but can't. My hip went out on me and now I'm struggling with that. It's my right hip and that's the same side that my bone graph was taken from too. So I have double the pain in my hip. My doctor wrote a script for me to get therapy on my hip as well, but I'm waiting on my insurance to approve it still. So I am still healing very well but the process is slowed down a little because of my right hip going out. I still have been trying to walk but it's really painful and I have a bad limp. At this point, physical therapy is what I'm looking forward to."

Posted on December 23, 2013

Posted on December 23, 2013

Just wanted to update you. Kelly is safe and sound in Maryland, sleeping in her hotel room. She couldn't use her legs to get off the plane again. They had to bring a special isle chair to get her off safely. The flights were actually fairly smooth this time with patches of turbulence. Even with how sick Kelly was, she still manage to take pictures. They will be posted when she wakes up. Later today a photographer from The Washington Post will be coming by to meet Kelly and take photos as well. I don't know how she is managing with all this, but somehow she's toughing it out.

Kelly has to be at Doctors Community Hospital in Lanham, Maryland at 5:30am (Eastern time) tomorrow morning. That's 2:30am for all of you West Coast people. Her surgery is scheduled for 7:30am for up to 4 hours but it should only be about 2 hours. We will continue to keep you all posted.

Posted on December 17, 2013

Posted on December 17, 2013

We've reached our goal!!!

This is so wonderful. We reached our goal and sooner than expected. You are all so amazing and thank you so very much for all of your generous contributions not matter how large or small. A huge thanks to Coatings Unlimited! We appreciate everyone of you. Technically we are over our limit because we were going to put in an offline hotel donation from Kelly's Uncle Rob. We will still post updates on Kelly's surgery. Don't forget to follow her on her on her public Facebook page at where you will find updates, photos, and videos. Thank you, bless you all and have a very Merry Christmas and a Happy New Year!!!

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