Hope of Healing for Emily

Our beautiful, joyful, and perfectly healthy daughter, Emily, has been struck by a rare and often misdiagnosed condition known as Dysautonomia. Just before her 15th birthday on May 4, 2018, Emily came to us saying she was dizzy and said she fell several times and didn’t know why. We assumed it was an inner ear infection or vertigo, but we were wrong. Very wrong. Her pediatrician sent us to the Emergency Room at our local Women’s and Children’s Hospital. Emily stayed in the hospital for three days while undergoing a gambit of tests including FIVE lumbar punctures, a CT scan, a MRI, and a variety of lab tests. She was seen by a number of doctors (neurologist, physical therapist, psychotherapist, ophthalmologist, and the hospital physician) and none of them had any real answers. It was there that she was tagged with the misdiagnosis of Conversion Disorder. Through prayers and constant research, we believe God led us to an internet forum where two ladies were discussing their symptoms. Emily’s symptoms were so similar that we knew we had found the answer. It was Dysautonomia!! Never heard of it? We had not heard of it either. Luckily in our research, we also found a cardiologist, Dr. Umesh Patel, that specializes in this crazy syndrome. Finally, we found a doctor who would do the tests necessary to confirm our belief. Over the last year and a half, more symptoms showed up which have been debilitating to Emily. She is no longer able to walk without assistance. She uses a walker in the house and a wheelchair everywhere else. Emily has to have constant supervision anytime she is out of her bed. She has severe Syncope, tachycardia, anxiety, depression, pain and sensitivity in her lower legs, nausea, vomiting, trouble swallowing, dizziness, heat sensitivity, inability to sweat, single eye crossing, sleep apnea, asthma, temporary loss of vision, and joint pain. Her senses have become amplified where anything above a baseline normal causes a fight or flight response. Loud noises, bright flashing lights, and strong tastes and smells can all send her into a spiral causing syncope and anxiety. She is even ultra-sensitive to weather changes, like a drop in the barometric pressure. She has also started having seizure like symptoms in her legs and arms. There is hope on the horizon!! We have been notified that the Mayo Clinic in Rochester, Minnesota will see Emily in January. She will be seen by a neurologist, a gastroenterologist, a cardiologist, and rheumatologist that all specialize in pediatric Dysautonomia. We will be there for at least one week for testing and doctor visits. If additional testing or specialist appointments are needed, we could possibly be there a second week. We are asking for financial assistance to help with travel, lodging, and food expenses, along with medical expenses not covered by insurance. Emily is unable to fly due to her condition. We will need to drive or take a train. Emily will need to keep her legs and feet elevated to keep her swelling down. The trip nonstop is 17 hours but we know that it may take 2-3 days of traveling due to her condition. Thank you in advance for whatever help you can give. We also ask that you keep Emily and our family in your prayers.