UPDATE: See below for the initial explanation.

Kimberly’s doctors have determined that she is incapable of working, even with “reasonable accommodations” as described in the Americans with Disabilities Act. After a three-year process Kimberly was finally granted disability status. Over those three years she depleted all her savings including all her retirement savings. And while her disability benefit is helpful, it does not even cover her monthly rent. After making up that difference, she still needs money for food, electricity, gas, insurance, etc. Her monthly expenses are approximately $2500 above and beyond what is covered by her disability check. Even if Kimberly could find a job she could physically do to supplement her disability check, the disability system strictly prohibits her from earning any money. Doing so would cause her to forfeit her disability status. She would then be required to start at the beginning of the process to get it back again - another three years with zero income.

So far, Kimberly’s $2500 monthly shortfall has been covered primarily by one individual. But this level of support comes at great financial sacrifice and is unsustainable for that individual. Kimberly has also received some help from her church and a small group of kind individuals. However, most of this help is sporadic and inconsistent. Since Kimberly’s medical condition is expected to persist for the duration of her lifetime, the level of financial support she needs is going to require a more consistent team effort for the long term.

We are looking for a group of individuals who are willing to commit to consistent and reliable monthly contributions on a long-term basis. Please seriously consider helping in this way. Whatever amount you decide to contribute, we ask that you are consistent and reliable with it every month on a long-term basis so Kimberly can have some degree of financial certainty.

INITIAL STORY:

Imagine accidentally putting your hands on a hot burner. Now imagine how it would feel if you could not pull your hands away. That is what my friend, Kimberly, feels in both her hands and her feet all day, every day. Two years ago, Kimberly was diagnosed with a rare neurovascular disease called Erythromelalgia (EM), also known as Burning Man Disease. EM causes severe burning pain, swelling, stiffening, and blistering in the hands and feet, sometimes in the arms and legs, and sometimes even in the face. The pain is excruciating, it is constant, and it is debilitating. Kimberly also suffers from a common characteristic of EM called hematohidrosis - literally sweating blood from her hands and feet, as you can see in the picture of the hand below.

There are no effective treatments for EM, and conventional pain management techniques typically fail. Kimberly’s team of doctors, including three pain management specialists, have been unable to provide Kimberly with any relief whatsoever.

EM is progressive. After only three years Kimberly is at the point of needing daily assistance with basic tasks. Even opening a water bottle or cutting her food is difficult. Kimberly’s doctor has restricted her to only two hours of physical activity per day - physical activity meaning normal daily tasks. She spends the rest of the day and night alone in her apartment trying to manage her symptoms - soaking her hands and feet in cold water or packing them in ice in an attempt to suppress the burning. Imagine having only two hours per day to do everything you have to do. It’s impossible.

Kimberly’s disease has resulted in the loss of her freedom, the loss of her employment, the loss of her hobbies, and the loss of much of her quality of life. Kimberly has said she feels like her life has no purpose, as she spends all her time just trying to manage her disease. Imagine dreading going to bed every night because you know the pain will keep you awake for another sleepless night. Then imagine dreading getting out of bed every morning because you know another day of pain begins as soon as you put weight on your feet to stand up. Kimberly wakes up exhausted every morning and is forced to budget her energy all day long. She grieves the loss of her previous life while still trying to find joy and meaning in her new normal. EM has been described as being forced to wake up and run a marathon every morning - without training, without rest, and without a choice.

Kimberly is a good soul. She is kind, thoughtful, and funny. And she has spent her life doing good things for others, particularly for children. What I love most about Kimberly is, she somehow always finds a way to push aside her own pain to bring joy to others. Please help Kimberly if you can. We are grateful for your consideration.