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I am raising money to battle a very rare, deadly disease, Stage 2 Refractory Celiac Disease at the Mayo Clinic. Please help me fight it!

Hello Friends,

I am, with great humility, asking  in my best Blanche Dubois, for the kindness of strangers. I have been fighting Celiac Disease, CVID, Fibromyalgia, Osteoperosis and Muscle Atrophy for many years. I have had painful surgeries including a colectomy, gall bladder removal and two feeding tube surgeries. When I had the emergency colectomy in 2008, I was told that if the surgeon had not arrived when he had, I would have been dead in half an hour. And the first feeding tube I received in 2011 became septic within a week and had to be removed immediately. And just a month ago, I had a horrible night in the Emergency Room where all I really remember is paramedics and then Doctors hitting my chest and yelling my name in order to revive me. As you can imagine, it has taken a toll not only on my body but on my finances. As of last year, my life savings was completely depleted due to medical bills. But my nightmare was only beginning. 

I lost my appetite in 2010 and began to lose weight rapidly. My body could no longer handle solid food. I would force myself to eat only to pay the price later with excruciating pain, nausea and a distended belly. I went to many, many Doctors only to be dismissed, told I was crazy and it was all in my head, told to take anti depressants or band aids like pain medication. 

Throughout 2013, I went through IVIG treatment for the CVID which is like chemo for autoimmune disease and it makes one just as ill as chemo. The side effects; nausea, vomiting, migraines, body pain and hair loss made me feel even worse. 

By Fall 2013, it felt as if my stomach was going to explode. I was hospitalized and another feeding tube was surgically implanted.(It was removed just a month ago because of the lack of care I was receiving. I had a feeding tube without a feeding pump or liquid nutrition and I could not get the Doctors to help me acquire the necessary equipment and medicated food. I had a feeding tube that was not being used and now I have a surgical site that is unfortunately not healing. And for someone with a compromised immune system, that is scary indeed.)

What I did find out during that period, was that I didnt just have Celiac Disease. I was diagnosed with Stage 2 Refractory Celiac Disease. It is an extremely rare form of Celiac. You know it's rare when you can't find much about it on Google but here is an excerpt from a recent article describing it in a nutshell:

"Refractory celiac disease occurs when your small intestine fails to heal and you continue to suffer fromvillous atrophy, even though you've been following a strict, careful gluten-free diet for a year or more. People with true refractory celiac disease — which is a very rare condition — are at much higher risk for serious complications, including a form of non-Hodgkins Lymphona." 

"Refractory celiac disease patients share several common characteristics: most are middle-aged or older (the condition is almost never seen in children), most have lost weight, and four out of five have diarrhea. In addition to their ongoing symptoms, most people with refractory celiac have malnutrition and vitamin deficiencies that indicate severe malabsorption." ( January 22, 2013)

The Doctor at USC who diagnosed it admittedly did not know how to treat it. I recently spoke with the Head of Gastroenterology at UCLA and he did not know of any Doctors there who had worked with patients with Refractory and a trip to Beth Israel/Harvard Medical in Boston in January also came up empty. 

After an exhaustive search, I found Dr. Joseph Murray at the Mayo Clinic in Rochester, Minnesota. He would not have taken my case if he hadn't seen something in the many medical reports I sent him. Medical reports dating from 2004 to the present day. 

Knowing how debilitating this disease is and that it can turn into Non Hodgkins Lymphoma makes me realize that this truly is my last chance, perhaps the first chance I've had to not only save my life but to finally have a decent quality of life again. 

I know most people have fundraisers done for them by family members but I dont have that. They know I'm sick but I dont have the kind of family that believes in helping their own. So I have dealt with this completely alone. I am grateful when I see or talk to a friend but that is a rare thing. Somehow, thanks to a kooky sense of humor, Turner Classic Movies, Star Wars, music, movies, Lucy and The Golden Girls, I am able to get through the pain and craziness of every day but I realize that the people who survive deadly diseases are the ones who have husbands and wives. Children and extended family. Friends and pets; an abundance of people. A TANGIBLE support system. I have had beautiful friends and people help me like Angels. They seem to swoop in when I am on the brink of disaster but it's the everyday, tangible presence of people that I do not have. 

In the last 2 years, I've left my home only to go to Doctor appointments and treatments. Muscle atrophy, osteoperosis, balance issues and being only 80 pounds because of the weight loss have made me fearful to just take a walk. After having been so active and working my entire life, it is terribly difficult to feel unbearable pain when I just move an inch. At this point, I am now bedridden and I feel as if my body has been hijacked; as if it is not my own anymore. 

It is difficult for me to have to ask for help of this magnitude. I am struggling with an issue I thought I had worked past many years ago; whether I am worthy of help, worthy of love and worthy of being saved. But it is quickly becoming apparent that I am dealing with a disease that will continue to be debilitating and continue to do considerable harm and if not treated properly, could very well cause the ultimate harm. 

I am exhausted and in constant, 24 hour pain but, unlike others, I have never given up on myself. I, after all, am the only advocate I have. If I dont fight for my life no one will. The money I am hoping to raise will cover all of my travel expenses including plane, Hotel and transportation and meals. I would need to leave on April 28 in order to make it for my first appointment 9:00 a.m. on April 29th. I have been told to stay at the Mayo Clinic until late Friday May 2nd in case they decide I need more tests or procedures and they have asked that I purchase a plane ticket with insurance just in case I need to stay longer. I was also told that I will be given a follow up appointment which means I would need to plan another trip to Rochester right away. In addition, since walking has become so difficult, it has become necessary to purchase a HOVEROUND. I did try to apply for one through Medicare but I was denied despite the fact that my application was filled out by a Doctor and my home nurse.  I also just recently got the the support of the Department of Housing Rights who fought my landlord on my behalf to allow me to have a service/disability dog; something that had been denied me in the past. As soon as I get home, I will get to work on applying for a dog that works with people with pain and mobility issues. I pray that with the right treatment, I will finally have my life back. But it is clear that the Mayo Clinic is my only shot at this point at getting treatment; the correct treatment for this disease. I don't just want to survive anymore. I'm tired of being alone every day and dealing with the pain and sickness every moment of every day. I'm too young to feel this old. There are too many things I still want to do. There is too much work I still NEED to do. There are too many places I still want to see. I refuse to believe that being bedridden for the rest of my life is all the Universe feels I deserve. 

This appointment came up quickly and I only have 3 weeks to raise the money for this trip, tests, Hoveround and procedures; one of which will require general anesthesia. I have exhausted all of my options. I have done everything from Western to Eastern medicine. I feel that this is my last chance. But what I'd rather believe is that it's a beginning. The beginning of my healing. But my healing will only happen if I see a Doctor and get treated by a clinic that understands how to treat this very rare disease. I know that times are incredibly difficult  but I hope you will find it in your heart to help me get to the Mayo Clinic. I would appreciate any amount of money that you can donate and I would be eternally grateful and I would best thank everyone who helps me by not only fighting and beating this disease but by living the life I was put on this Earth to live with presence, Faith, gratitude and by paying it forward every chance I get. I thank you for reading this from the bottom of my heart. 

With gratitude,

Vanessa Marquez

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