Maraya's Fight Against Behcet's

I am Maraya Cupani a 24 year old woman who loves my son an my family. On the outside I look perfectly normal, but I am far from normal anymore. I suffer from Behcet's disease, an autoimmune disorder that causes painful sores that resemble burns all over my body but specifically in areas that produce mucus in the body. It also has cause joint pain and swelling, difficulty eating and speaking, hair loss, extreme weight loss, ocular discomfort and loss of vision in my left eye, constant pain, and the loss of much of my molbilty; I am now required to use a wheelchair (although sitting up straight puts strain on my hips and causes immense pain), and I am unable to lift my arms above a 90 degree angle in any direction. 
Although I have been showing symptoms for quite some time, I was officially diagnosed in November of 2015. During that hospital stay I had to miss my son's 3rd birthday, which was equally as painful as my physical symptoms. These symptoms have gotten progressively worse with time and have not slowed or have given me any relief
In December of 2015, in order to be treated properly I was referred to a specialist with Penn Medicine. As of August 2016 he had suggested that due to the rapid progression of my illness that I may better off with a specialty clinic.  Unfortunately Behcet's is a rare disease and it is hard pressed to find a doctor who has experience treating this disease, let alone a specialty clinic.
After much research on my part I had reached out to the Mayo Clinic and was accepted as a patient. I will have to travel to Jaxonville Florida for a period of 5-10 days to be seen by one of their rheumatologists who specializes in Behcet's disease. Unfortunately I will only be seen by that department and my some of my other symtpoms will not be addressed at all. I was told because of the number of patients who want to see each of the other specialists I would like to see it could take me over 2 years just to get seen for a consultation by each of them.
I take over 12 medications a day, multiple times a day. I will be put on a infusion treatment, and one of the medications that may shortly be added to my regimine is a low dose chemo. In some cases, the side effects either cause new symptoms or worsen my exisiting ones. For the time being I am at a physical rehabilitation facility to monitor me and to try to help me regain a bit of my range of motion
There is only one place in the world that treats all of the areas that Behcet's Disease affects, and that is in London, England. I am in the process of submitting my name and medical information in order to be accepted into one of these programs abroad.
If I do get accepted it will be bittersweet. It will be sweet because I will have hope that I could have major improvements in my condition. It will be bitter because my insurance will not cover anything overseas. I already have tens of thousands of dollars in medical bills, and they will only add up as I go to the Mayo Clinic. I also have travel expenses to get to each of the places that I go. The worst part of all this is not getting to be with my son everyday, but although I am in a hospital I am still his mom. That means I still have to pay for his school program and care, I have to continue to pay for our apartment so we don't lose our home, and also provide anything else that he may need while 'mommy's away getting better'. This current hospital stay has lasted over 3 weeks so far, but I will be able to return home to my son before I make my first trip to Jacksonville the week of September 12, 2016.
The donations that I receive will be used for my travel and lodging expenses to these exclusive clinics, for my insurance copays and deductible, any required medical testing, for my medications that have proven very costly, any medical equiptment I may need (wheelchair, walker, tubseat, etc), and for care needed for my son while I am away. I will also need to search for living arrangements that will accomodate my medical equiptment.
Each person who has been kind to me throughout the duration of my illness has touched my heart and will all be remembered and appreciated. This campaign is so important to me because each time I have a flare up and am hospitalized I am gone for weeks at a time. I can't continue to live with this type of pain and watch my own body wither away before my own eyes. Any dontation made will bring me one step closer to being the healthy, confident, independent, strong young lady I once was. More importantly, with my health will also bring back the ability to be the mother that my son means to me; and I know he misses me as much as I miss him. 
I will be forever grateful for any contribution made. It will help me get my life and body back. With each step towards being healthy the dim light at the end of this dark tunnel of my illness illuminates a bit brighter. Please help me get my life back.

Thank you will never be enough. But for now, it's all that I have.