Carol Parkison Koblentz and 3 others are organizing this fundraiser.
Please help my niece Leesa get the medical treatment she needs to fight a rare autoimmune condition where her body attacks itself. The rare variant she has is encephalomyelitis, the most aggressive, severe and global form of Stiff Person Syndrome. This severe form of stiff person syndrome can kill within months without treatment. She is being faced with horrible medical bills because the only hospital that can treat her rare disease does not take her health insurance. Leesa had always been a sporty teen-young adult. Fast runner, great swimmer in training, name a sport, she played it and loved it. She has been fighting this disease since she her senior year, and I--her Aunt Carol--have lost track of how many times she has almost died. I gone to visit her to say goodbye four different times. She has been resuscitated multiple times. No challenge, chemotherapy, life threatening situations and life changing events had stopped her from being the positive strong lady she is today. Even when she had to temporarily use an electric wheelchair, it hasn't stopped her from pursuing all her goals, including becoming a medical doctor, a hemato-oncologist Stiff person syndrome can be so strong and painful. Do you know how a muscle cramping hurts? Stiff person looks like epilepsy or tetanus, where all the muscles can't move, head to toe. No muscle is spared: clenched fist, elbows bent, legs stretched, back bent back, and neck like a board. She can't open her eyes or mouth, her chest and abdomen feel like someone is squeezing them, so it is very, very hard to breath or speak. When the chest and abdomen muscles squeeze really hard and won’t stop, anesthesia and a breathing machine are the only way for Leesa to stay alive. When the cramping or spasms are milder, oxygen or a breathing machine that doesn’t require cutting the throat help Leesa breathe. This severe form of Stiff Person affects the brain stem, the part of the brain the controls basic functions like heart rate, vision, and breathing. Can you imagine how scary it is to have to fight to breathe with your heart racing, and you can barely see, and sometimes you can’t even move well enough to hit a button to call for help, or speak to ask for help, or type a text to communicate with someone who is friend or family, but not nearby? No, this disease is not cancer. It is a rare disease that only a very few specialists can treat. One of the treatments is to clean out antibodies that cause problems out of Leesa’s blood. There are other treatments that help as well—I’m her Aunt Carol, and I don’t know the newest ones—I just know she needs them to be able to move, and breathe, and live. But don’t give up—Leesa doesn’t. She is almost done with medical school. Her best day is when she could do something positive to impact her patients. She is working hard to become a pediatric hemato-oncologist. She has been working in oncology since 2014, in cardiology since 2014, in pathology in 2014, and is a teacher’s assistant in pathophysiology since 2014. She participates in charity events, whenever possible. She’s devoted her life to help others and be the best that she can be. Could you please find it in your heart to help my niece pay the medical bills? Her life depends on it, and so does her dream of helping others.