Sasha's medical fund

My name is Sasha and I'm 26 years old. When I was born I was diagnosed with Klippel Trenaunay Weber syndrome which is a rare congenital vascular-disorder in which a limb may be affected by varicose veins, and/or too much bone and soft tissue growth. I've had my first surgery when I was a year and a half on one of my toes. And countless laser treatments on my right leg. When I was 8 or 9 years old I started seeing an orthopedic surgeon in Fargo who specialized in the bones. When I first met him he told us that I did have a leg longer than the other, that my right leg wasn't growing at the same rate as my left. He wanted to perform an operation to correct the limb difference. I would see him very 6 months and every time I went in, he would state that we needed to wait to until my leg grew a certain length. Well there was really no way of telling how short the right leg was due to me not being able to be straighten it. He had believe it was at a 65 degree bend and would not go straighter. But we went in again and again until I was about 11 years old. The doctor still stated we needed to wait. At that time I had a shoe lift on my right foot to compensate for the discrepancy. When I went to the health care accessories location for my shoe lift, the technician recommended that I visit a doctor in Bismark. Shortly after we saw this doctor and multiple tests completed, the doctor in Bismark stated that I had a bigger limb discrepancy then the Fargo doctor stated, and that because of the length difference my hips weren't even, making my spine curve. At the end of that appointment the doctor referred me to see a pediatric orthopedic surgeon at Gillette children's hospital in St. Paul, Minnesota. The doctor in St. Paul first tested me in a motion analysis and took multiple x-rays on my lower half. The first thing that he wanted to do was to do a surgery to help give me more range of motion in my leg. We then did the operation where a metal leg fixator that inserted 19 pins in my leg and my foot. This fixator also had a motor on the back that would push little by little each week to help extend the range of motion. I was in the fixator for I believe 3 months.

After I had it removed I was in a cast full leg length cast as well. After the cast was removed, I started physical therapy 2 to 3 times a week while wearing a knee mobilizer to keep my leg as straight as I could. A year after I started PT the St. Paul doctor still didn't see much progress and I started having some troubles with the movement of my ankle. We then started doing botox injections in my calf to help relax the muscles. I did 3-4 sessions with the outcome of having full range of motion in my ankle for a month, but it just ended up going back to the way it was before, stiff and no motion.  After another surgery a year later to straighten my knee cap, I ended up with nerve damage in my foot. With no progress happening from previous operations and PT, the doctor in St. Paul stated his only option would be amputation, but that wasn't really an option that my family wanted to consider at that point. Fast forward to June 2012 when I started experiencing a lot of pain in my calf and my foot. I didn't think too much of it because I always had little aches and pains in my leg. I then went into the walk in. By ultra sound they found out that I have deep vein thrombosis behind my knee. Immediately they placed me on Warfarin and daily shots of Lovanox for 5 days. I was on the Warfarin for about 6 months when we saw that the clot dissolved. 3 months after the first DVT dissolved we discovered that I had another DVT in my calf. That's when they put me on Xarelto. An interventional radiologist in Fargo preformed a surgery in August 2014 where he abladed (lasered closed) a blood vessel that he believed was causing the pain in my calf. The pain ended up stopping for about 1-2 months but came back in full force. This doctor then stated he wanted to perform the same surgery on the same vessel again. But thinking to myself, if he already closed it that shouldn't be the problem. So after the last appointment with this doctor I did some research and found a doctor in Children s of Wisconsin. I contacted them to see if they would accept me as a patient and I got a response from a doctor with over 30 years of experience with my KTWS. After seeing this doctor she said she wanted to do a laser ablation with filters and coils. The WI doctor stated that this was the most intense KTWS that she has ever seen and if I was still in pain after this surgery she agreed that amputation is again the best choice. This is where I am right now. I've had an appointment in December with the Gillette Children's Hospital doctor and he said his clinic wouldn't be able to accommodate me because of my age. He is in the process of finding a team of doctors to do the amputation which is a life or death situation because of the KTWS. With all my doctors appointments, surgeries, and medication I am currently in collections with every medical bill I have. I am living in pain all day and working full time to pay my bills. I don't have a date for my amputation yet but most clinics now are asking for a certain percentage of the operation down before it actually happens. So I am asking for help to make my life less painful from the kind hearted people that are willing to assist. And I know it might be unrealistic goal but I have no idea how much all of this is gonna cost. So anything will honestly will help even if it's  $5. Many thanks in advance to help me live a painless live! Will update you all when I hear more!