Carol has a very rare genetic condition called Hailey-Hailey Disease. This awful skin disease can be mild or life-threatening. In typical Carol style, she has one of the worst cases her doctors’ have seen. Hailey-Hailey Disease causes blistering both in the folds of the skin and over large areas. But these are not just benign blisters that go away. No, the blisters cause whole areas of Carol’s skin to literally slough off, and before the skin can recover from one breakout another one can begin—yes, new blisters can form on the raw, open skin that is trying to recoup from the beginning breakout. It is painful beyond belief. Large areas of the body, covered with raw, oozing blisters that lead to large open areas of epidermis. It is not a pretty disease and it is not an easy disease. It has taken us years to find out exactly what it is and years to try to figure out what to do. Because, you see, there is no cure for Hailey-Hailey. All we can do is treat the symptoms. And since Carol’s “symptoms” are so ferocious, the treatment is as well. Basically, what her doctors are doing is burning off the affected skin with radiation therapy. Our hope and prayer is that the new skin that grows back will be stronger. But that takes a lot of time and Carol must go through a lot of pain for that to happen.
So, friends, here’s what needs to happen. We need to help our friend Carol. After Christmas, Carol will go back to Nashville for 30 additional treatments (15 radiation therapy treatments on two different large areas of her body). This will require over a month’s stay in Nashville. Carol lives on disability. And we are so glad she has that. But it simply is not enough to cover her living expenses while she is in Nashville where it costs approximately $100 a day for her to stay. She doesn’t qualify to stay in any of the Hope Houses or anything like that, because she does not actually have cancer. She has a rare genetic disorder—one that is listed on NORD (the National Organization for Rare Disorders).
We can do this. We can help with this. We can make sure Carol doesn’t have to worry about this. We can help the one person who would help anyone else—the one person who would be there, who HAS been there—for many of us. It’s the Holiday Season. The season of giving. The season of love and light. Please help us share some love and light with Carol. She needs it and that’s what friends are for.
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