Living with a rare and uncureable auto-immune disease called Behcet's, Mendi's wish is to just live because she's fighting for her life, watch her babies grow, be with her family and be as healthy as possible.
Missed diagnoised almost 2 years ago with Stage III Systemic Mastocystosis, only found out the end of December the treatment wasn't working and she had new set of problems on top of other problems that were getting worse. She had Masto but the treatment wasn't affective nor doing any good, because she was getting worse. This disease causes lesions, not only on the inside of your body but the outside too. It affects your bones, muscles, tissues, the brain, causes vision loss as well as, affects your ability to eat. It also affects every nerve and sensory part of your body.
To date her disease is the worst documented case in US history. A rare disease is considered to be rare when under 200,000 people have the same thing with in a country. In the United States, there are only 5,000 to 15,000 people that have this disease. There is no blood test to show, you have this...however, there are 5 markers of this disease you have to at least have 2 to 3 of them for you to be diagnoised with it...Unfortunately...she had all 5. The night she found out from her Oncologist, he told her she must be admitted to the hospital...she talked to her OB/GYN and he refused to think, it was that evasive and drastic...Her OB/GYN, researched everything, consulted with others and called her back and said....her Oncologist was right, the only hope was to go into the hospital for treatment. She was admitted the following morning & Mendi spent 25 days in the hospital in January to the tune of over $200,000 before insurance coverage, only to find that her medical expenses aren't going to be fully covered. And insurance company is refusing to pay for her aggressive and intensive chemo treatment that is in the process of being FDA approved. She also requires, physical therapist to help with mobility twice a week, as she has difficulties walking and moving her legs and body. As to date, the Physical Therapist has told her and the family, that it's time for a wheel chair and a mobility cart. Her bones are being affected and she's had to many falls from dizzy spells and has to be assisted at almost every step. And her phsycial therapy is also not covered as of yet either. The family is working on disability coverage in the meantime. She's also provided with a home health nurse that comes in to flush and maintain her caths & meds. As much as it pains her to have her whole life out there on the table, Mendi's has had a loss of vision in one eye and will most likely go permanently blind. The doctor's don't know how long she will have to continue chemo treatments and there was no prognosis given on a timeline, they've not told her she's going to die, but yet haven't told her if she will make it through the treatments...only for the fact, they don't know....the statement was, "this is going to be a long and rough road, if you're willing, let's go." No statment as ever been asked or even told, if she is or will die...But she's putting in a hard battle to continue to live. As she doesn't see a failure to thrive label written out on her forehead.
The family is asking for donations to help pay medical costs , travel to and from doctor visits and treatments and daily basic living needs, since she's no longer able to work at all. While members of the family are trying to help cover things....it's simply not enough to cover the tremendous costs, she still has 2 small children to raise and support. Please know that we are reaching out to the community for some moral support and donations. The family is working with a staff of doctor's to help get her stable, in remission, so she can continue to live a healthy life with her family.
The family's 1st goal is to help cover medical expenses, move her from Mississippi, where she's currently at and move her back to Texas with the rest of her family. SO that family that lives there can help her with her daily needs and the health and well-being of her children. Mendi's wish is also to get healthy and get her disease in remission and pay it forward. Thank you and God Bless
****Personal Donations can be sent via
Clifford & Zeondra Patrick
c/o Mendi Fant
208 Apache Trail
West Lake Arrowhead
Wichita Falls, Texas 76310
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