Hi, my name is Stephanie and I'm 38 years old. I have a rare bird called Wilson's Disease, which means I have a mutated form of a gene called the ATP7B inside my liver, and it prevents excess copper from being excreted from the body so it builds up in the liver and attacks the nervous system and other major organs. Only roughly 1 in 35,000 people in the world have it. It gave me liver disease, and because Wilson's disease is so unpredictable and a higher MELD (Model End-stage Liver Disease) score can bring about very bad irreversible neurological damage such as loss of motor skills and function, schizophrenic-type symptoms, coma, and death, I need a transplant sooner than many with more common forms of liver disease.
I live in New Jersey, and the liver transplant rules are completely insane. I would have to wait until my Model end-stage liver disease (MELD) score is 40 or higher, which could neurologically destroy my life if I don't die while waiting. Other regions in the area have just as long of a wait, and the area I need to go to is down south, where I can be transplanted earlier. We tried at one hospital once before in FL, but was ultimately rejected for reasons that even my Primary physician finds unethical. We ultimately ended up wasting $10000 for nothing. I wish to go to a different hospital in FL in about 8 months to a year--a more progressive one in Miami. Lodging is not a problem ; we have a place to stay. My caregiver and I will need transportation, medical supplies & medication, food, and help with my Medicare copays. I receive less than $1000 a month in disability, and pay taxes although I'm below the poverty level.
So once again, I'm not asking for money for a vacation--I'll be in the hospital being evaluated, and then hopefully staying in Miami while I wait for a match. Once again, I'm not asking for money for a Prada handbag, a new pair of Jimmy Choos, or a tiara from Tiffany's--all I want is my life back. I was a filmmaker, a writer, an explorer, and a photographer. I used to do environmental charity work. I enjoyed all of it and miss it all so much since the Wilson's disease & liver disease reared its ugly head, so I ask you to please, please donate towards a good cause so I can live to shoot a feature-length documentary on Wilson's disease to raise awareness which i plan to circulate to festivals in the hopes it gets picked up & awareness can be raised. Would also like to finish my novel, expand my jewelry business, not take the little things for granted, and enjoy my life because I'll be healthier. I would like good things to happen to me, for once in my life, and I'd like to be better while my parents are both still around. I want nothing else.
Please help save my life! I have decades ahead of me, and am too young to die.