Emily is a delightful twenty-year-old girl who was in perfect health until September 3, 2012. On that day Emily came down with a seemingly “normal” viral infection that ultimately led to an autoimmune nightmare. Now, five long years later, we are asking for help to fund a stem-cell procedure that remains her only hope to restore health.
Emily was just starting her sophomore year of high school when the virus struck her. As a consequence she spent the remainder of her high school years mostly in hospitals and at doctor appointments. Emily's fighting spirit allowed her to graduate on time with honors.
Emily's condition is so rare that she bounced from one diagnosis to another while receiving no true name for what collectively was taking her life from her bit by bit.
In 2012 she was diagnosed with gastroparesis (paralyzed stomach). This paralysis does not allow Emily to eat and causes unrelenting nausea and vomiting. After several trips to Ohio and Kentucky to find specialists who could try to help Emily, she had a gastric neurostimulator implanted to assist with nutrition. Unfortunately, the nausea and vomiting have never relented and Emily now has a tube into her intestines for overnight feeds. As of late, the gastroperisis has reversed the digestive motility so even feedings directly into the intestines are being expelled.
Autonumonic disease did not stop at Emily's digestive tract. Emily also has an orthostatic hypotension diagnosis which requires several medications to keep her blood pressure high enough so that she can stand without passing out. As time passed, now came the small fiber neuropathy diagnosis. Her pupils have not responded to light since the virus and this was the one clue that led the doctors to the autoimmune diagnosis. Emily is most recently starting to experience symptoms of bladder dysfunction. Along with these conditions she also has very painful endometriosis.
Emily typically has two to three doctor appointments per week and is hospitalized frequently. We have brought her to Texas, Ohio, Kentucky, and Illinois to see specialists. Emily has tried every treatment that has been suggested to her with little to no results.
We believed that there had to be a treatment that could help Emily. In believing such we came to be friends with others who suffer from the same illness. One of the girls was strikingly similar to Emily, a young girl who became ill after a viral infection who essentially had the same symptoms. This girl quickly became our close contact. That particular girl was ahead of Emily in that she had been sick longer, a full five years longer than Emily. The girl underwent a stem cell transplant as there truly was no other treatment left for her. Essentially, her stem cells were harvested. She was then given a high dose of chemotherapy. Her stem cells were then reintroduced to her system. This process reset her immune system. Since her transplant over a year ago, she has been doing very well, eating again and in remission. The doctor who performed her transplant felt he could have similar results with Emily.
Due to the very small sample size of individuals that have this rare disease, the insurance carrier believes stem cell treatment is experimental; therefore, insurance coverage has unequivicaly been denied. This procedure remains Emily's only hope, one that will help Emily as well as potential future patients . We could never thank enough anyone who would consider assisting us in funding this procedure.
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