My name is Denis Karp. I am a freelance musician and teacher. For the past 9 years, I have struggled with pain and extremely limited physical activity, but I have recently been approved to receive an amazing life-changing device called the ExoSym. This device would allow me to resume all normal activities, hopefully without pain and without restrictions! Running, hiking, using the neighborhood walking trails that go behind my house, participating in neighborhood 5ks, keeping up with my niece and nephew, walking through DC, Chicago, Baltimore and all my favorite cities - this would all become possible again! It would also help me become a better teacher and performer!
Here is my story:
In 2009, I was involved in a bad car accident when a driver crossed the center line and hit me head-on. I broke my left leg and both ankles, but the right one was crushed badly. After lots of physical therapy and a second surgery 6 months after the initial one, I was able to move back home 8 months after the accident. I was still in constant pain, could not stand for very long, and walking even just one block was extremely difficult and painful. I had also lost my job, but I was fortunate enough to make the switch to living my dream of making a living as a musician and music teacher. After several years, I came to the conclusion that the house I loved (which I had just bought 6 months before the accident) was simply too difficult for me to stay in - there were too many stairs and long commutes were too painful. One of the reasons I bought my first house was the nearby state park with many hiking trails - I used to love hiking, but could no longer do it. After years of searching, I was able to find a one floor, no basement house near the area I taught most often.
Two years ago, I started to develop more severe knee, hip and back pain. Thanks to an amazing physical therapist, I was able to work through these problems, but she convinced me to go back to the orthopedic specialist, because she believed all these problems were related to my right ankle. It turned out that I had almost no cartilage left in my ankle (bone-on-bone arthritis) and avascular necrosis (areas of dead bone). It was determined that the best course of action would be to undergo another surgery to completely fuse my ankle. Last summer I had the surgery done - I now have a plate and screws in my right ankle to go with the metal rod and screws in my left leg. The ankle fusion means I have no motion in the ankle. My incredible surgeon was able to straighten out my foot during the surgery. It has definitely helped with the pain and has allowed me to stand and walk more than before. However, I would still love to be able to do more.
My surgeon recommended seeing if I would qualify for a device called an ExoSym. It was designed to allow members of the military with severe ankle/leg injuries to remain active duty. The device helps cushion the joints and helps to provide the normal motion of an ankle, allowing users to resume full physical activities. The internet is full of amazing and inspiring stories by people who have received this. There is only one place in the world that makes the ExoSym - it is a facility with a small team in Gig Harbor, WA, so it is not easy to be accepted into the program. I tried to keep my expectations low (which is why I did not tell many people about this possibility).
I went in for an evaluation at a clinic in Laurel, and they sent photos, videos of me walking, questionnaires and evaluation forms to the developer of the device out in WA. I just received word that I have been approved as a good candidate! The program requires one two-day trip to the facility in Gig Harbor, WA for a trial fitting, then a separate full week for casting, fitting, training and additional adjustments. Unfortunately, due to recent changes in federal regulations, the company is no longer able to accept insurance. This news was hard to take. The cost of the ExoSym, associated materials and training is $9,000.00. Adding in the cost of two round-trip flights to WA, a rental car (the clinic is about an hour away from the airport), and a hotel, and the total cost is well over $10,000. I have given it much thought, and have come to the conclusion that due to the amount this would improve my life, I cannot pass up this opportunity. If I wait, I may no longer be considered a good candidate, and there is certainly no guarantee that federal regulations will change any time soon.
The company is certainly not happy about not being able to accept insurance and recommends setting up a Go Fund Me Page, so here I am, asking for help. For those of you who know me well, you know how hard it is me to ask for help, and it is especially difficult for me to ask for money (even if it is payment for a job). I know times are tough, so please do not feel obligated to donate! This is something I can do if I wipe out all my life’s savings and retirement funds, which is obviously not ideal, so every penny helps!!