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From a Mother's Heart

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Hello, my name is Marie Asbill, and I am asking for help to fund life-saving medical care for my daughter and to make sure she continues to have an allergically safe space to live. I am trying to raise $15,000 to cover:

·        Labwork, CT scans, abdominal/ovarian ultrasounds, upper/lower GI studies, possible EGD and/or colonoscopy, bone density scan.

·        Oral surgery to save my daughter’s teeth and prevent infection.

·        Living expenses, moving expenses, and medically-necessary home renovations.

·        Travel expenses for specialist medical appointments.

As some of you know from the early days of this campaign, my daughter’s safe breathing space, a small, rural rental home, is going on the market in a few months. We are currently in no financial position to purchase the home, and have been unable to sell our house in the city, where my daughter’s asthmatic condition became so severe that she struggled to sleep, eat, or function. If she does have to move back home, our house will need renovation for her to even live there temporarily: carpet removed and replaced with hypoallergenic flooring, specialized air filters installed, duct cleaning, etc. I have been helping her cover living expenses while trying to maintain the mortgage on our home. Without assistance, we’re in real danger of ending up homeless. She will no longer be able to pay the rent and utilities at this home where she breathes well, and I could lose my home too. At that point we will be in a terrible position, because it's very difficult to find a rental property medically safe for my daughter, who is dangerously allergic to molds, dust, mildew, and other common household allergens. Ideally, she needs to stay in this rental home until December so that she can focus on these other health conditions and recover from surgery and various procedures without having to face worsening asthma, and so we will have time to prepare a safe space for her in our home. We’ve cut costs to the bone but maintaining two households for the next few months is beyond what we can manage without help. Finally, my daughter’s medical needs have become even more dire over the last few weeks. Please bear with me as I give you some background about what she faces.

At thirty-nine years old, my daughter has lived with severe allergies since infancy. Many of you may know someone who has nearly died from a bee sting, due to an allergic reaction known as anaphylactic shock. My daughter is allergic in this deadly way to not only bee stings but also to foods, many medications, and her body’s own natural hormonal processes. She first experienced near-fatal anaphylactic shock as a toddler. Since childhood, she has also suffered from severe eczema that leaves her covered from head to toe with painfully inflamed, dried skin patches that become raw, seeping, infected wounds and hinder basic functions (walking, wearing clothes, bathing/showering, sitting in a chair). These eczema flares can be both disfiguring and debilitating. At times she was even hospitalized with infected eczema, when the infection spread throughout her body and required IV antibiotics. In spite of her health challenges, she earned a scholarship to college and was even able to volunteer her time to worthy causes. Unfortunately, in early 2002, she was diagnosed with adult-onset asthma. For the last fifteen years, she has suffered with life-threatening conditions that doctors attempted to treat with medications (i.e., Xolair, Cyclosporine), but they had to discontinue these treatments because of side effects or adverse events.

As a result, the go-to treatment for several of her conditions was prednisone. Now, years later, she still has to take daily prednisone because her adrenal system no longer naturally produces enough of the cortisol that all humans need to live. However, prednisone is as damaging as it is life-saving, known to cause skin breakdown, bone deterioration, and other health problems over time. In my daughter’s case, the prednisone has made her vulnerable to early osteoporosis, internal bleeding, gastrointestinal damage, and has attacked her teeth, gum tissue, and bone structures within the mouth. The damage has progressed to where major dental work is required to save her teeth, preserve and restore gum tissue, and prevent infection. Every quadrant of her mouth has been affected, and she is in constant pain while eating and sometimes even at rest.

My daughter’s compromised immune system means that a severe oral infection is cause for concern for more reasons than just painful gums and discomfort with eating. She doesn’t just risk losing her teeth; she is at risk for the infection spreading to her heart. Also, the doctors have exhausted conservative treatment options for her autoimmune conditions, and she is having to resort to biologics (you have probably seen TV ads about biologics: Embrel, for example). She is waiting on a new biologic expected to be available by spring 2017. While this medication will target her autoimmune response, it will also lower her natural immune resistance to viruses and infection. Even without further suppressing her immune system, she is so weak that I worry she would not survive another infection spreading throughout her body, or involving her heart. Along with upcoming dental procedures, she needs to fund at least ten medically-related trips during the next couple of months while she gets assessed by dermatology, rheumatology, endocrinology, GI, OB/GYN, neurology, and immunology.

Bottom line: the prednisone that keeps my daughter alive is wrecking her body, and without medical intervention to repair the damage already caused and to jump-start her adrenal system so that she can taper down from the prednisone altogether, she has little chance to survive and look forward to a normal life.   

Up until the last few years, I was able to fund my daughter’s medical care and make sure she had an allergically safe place where she could live, breathe, and be close to her doctors for extended medical treatment. Keeping my daughter alive took a large portion of our household salary and home equity as well as my retirement funds. Now, when she needs help more than ever, I can no longer fund her care. I am a 70-year-old, retired nurse who underwent open heart surgery in 2013 to repair a leaking mitral valve, and I am so desperate to keep my daughter alive and in better health that I attempted to return to work as a hospital nurse in December 2015. Three months later, I had to resign after I was diagnosed with atrial fibrillation that did not respond to cardioversion. My cardiologist and primary care doctor have insisted that I remain retired. My husband is in declining health as well, and we depend on our social security income to live. 

Against all odds, my daughter has attempted to work whenever possible. Currently, she is only able to work part-time and from the safety of her own home. This telecommuting job qualified her for a basic Affordable Care Act insurance plan that allows her to see specialists and afford EpiPens, eczema creams, and other medications, but this limited plan does not extend to periodontics/oral surgery, and there are costly co-pays, deductibles and co-insurance for all the lab work and diagnostics she needs. Having insurance at all is a blessing we appreciate, but without being able to afford the co-pays and co-insurance, my daughter will not have access to these necessary tests, and she doesn’t qualify for medical financing plans or personal loans. Her financial situation worsened over the last couple of months as her work hours decreased while she undergoes medical treatment.   

It is very hard for me to take this step of asking for help. In the past, I have generally been the person offering to help others in need. But this is not a time for pride. My daughter’s life is at stake, and I no longer have the financial means, or the ability to work to support her basic but important goals of breathing, living, and working. You have to understand. This is a woman who, while battling her own health problems, was with me every single day of my hospital stay after my open-heart surgery. She tirelessly advocated for me with the surgeons and specialists and made sure I received the best possible care, when I was too weak and ill to use my own experience in health care to advocate for myself. She was then an integral part of my recovery, always willing to give my health needs precedence over her own chronic conditions. She is our only child, and she has been our champion, our support system in times of need, our confidant and advocate. I can’t imagine life without her. I can’t face the possibility that she won’t live to fulfill her dreams of making a difference in the world and helping others. She has never given up and never given in, but I can see her losing hope, with the toll this recent crisis is taking on her. She is weak and exhausted, and I’m terrified. Please help me give her a fighting chance against these frightening medical challenges. Thank you so much for taking the time to “listen.” I will appreciate any assistance you can provide. No donation is too small. Tiny amounts add up to real, practical help and also provide hope and encouragement during this frightening, difficult time.

Organizer

Marie Asbill
Organizer
Columbia, SC

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