Help my wife battle a rare blood disorder

Where do I begin?  My beautiful wife, over the course of the last 12 years we have encountered many medical hardships, I'm not gonna go into all of it, but i definitely wanna talk about what lead up to today.  2008, 5 months into our relationship, my wife Stephanie ended up with a blood clot in her leg. went to the doctor, diagnosis was "factor V Leiden mutation" treatment was 6 months bed rest, leg elevation, 3 weeks of lovenox shots 2 times a day, and the Coumadin (warfarin) daily for the course of the 6 months which brought us to January 2009. Blood clot issue resolved, her doctor then took her off the warfarin.  1 week later My wife  became very ill, throwing up, sensitive to light and sound, really bad headache. On call nurse said maybe the Flu.   It was definitely flu season at that time so made sense to us.  After about 3 days Symptoms were getting extremely worse.  So I rushed her to the emergency room.  Emergency doctor said flu but because of the headache he wanted a CT scan of her head.  about 20 minutes after her CT scan doctor came in saying she had a blood clot in her brain, specifically in the main vein that leads to the heart, doctor then pulled her mom and I aside to tell us that she has a 30% chance of surviving given her critical state and that we need to get her affairs in order.  Aside from that,  the doctor said that the hospital wasn't equipped to handle a case like hers and had to be transported to Aurora Bay Care in Green Bay, Wisconsin. and if by a miracle she survives would be in the ICU for 6 months or more.  SO... at bay care a blood specialist determined that on top of "factor V Leiden mutation" she also has "Protien S deficiency"  both of these disorders are somewhat common to have separately.  Most people either have one or the other. In my wife's case somehow has both which is extremely rare.    Miraculously she survived the blood clot in her brain and was able to continue life as if nothing happened.   Her doctors were Baffled at how fast she recovered and that she didn't sustain any permanent damage.  With both disorders She was ordered to stay on Warfarin for the rest of her life to maintain an INR level between 2 and 3. Which is therapeutic to prevent blood clotting.   Since then she's had 2 more blood clots in her leg, and an IVC filter implanted to prevent any blood clots reaching her heart, lungs or brain.  its been 2 years incident free until now.  2 months ago we noticed a red blotch or rash on her foot.  she said it itched and was annoying and maybe thought it was athletes foot.  tried to treat it and it continued to wreak havoc.  Maybe a yeast infection or some kind of fungus, tried those treatments and got no where.  2 months later this red blotch started to hurt and a black dot appeared in the center of the blotch. Walking became more and more painful.  So we took her to the emergency room.   Emergency doctor took a look and had no idea at what she was looking at so she referred us to a dermatologist.  A day later her Primary blood doctor wanted her to go to the Wound clinic for a biopsy before we went to the dermatologist.  biopsy came back with yet another super rare blood clotting disorder.  Thrombotic Vasculopathy with epidermal ulceration including atrophie blanche (livedoid vasculopathy).  Very uncommon and difficult to treat very painful and limits her ability to even walk,  and can be recurring.  we exhausted all our funds, just trying to figure out what the problem is and now were looking at an extremely expensive treatment plan.  As a result of this condition she isn't able to work (Chef) until this is resolved.  Neither of us have health insurance.  I'm working on that as we speak, but in our line of work (Restaurant Industry) health insurance isn't offered and to purchase outside insurance is extremely expensive. Really don't know where to turn and this is my last resort.  I don't like asking for help but I was told to put my Pride aside.  Anything will help. We are struggling to pay the bills as well as the Doctor bills. I know alot of people are also struggling but we have run out of options. Even just a share would help greatly in hopes that the right people see this and point me in the right direction of a doctor who can help. We greatly appreciate any help you can give. Thank you for taking the time to read my wife's story. Have a blessed day!

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Organizer

Zachery Benzinger 
Organizer
Manitowoc, WI
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