Addy’s Grace Medical Fund
In August of 2020 Addy was diagnosed with a rare autoimmune disease ANCA-vasculitis, which caused her to be in stage 4 chronic kidney disease. Although her doctors began treatment immediately, her kidneys have deteriorated putting her at the final stage of CKD, end stage renal failure. She now requires dialysis until her autoimmune disease stays in remission for at least a year and the process for a transplant can begin. Because she retained so much fluid prior to starting dialysis, Addy became fluid overloaded, causing a dangerous situation of fluid buildup around her heart and lungs. This landed her in the ICU for 3 weeks, undergoing 2 separate cardiac surgeries to 1st drain fluid from around her heart and then permanently open a window around her heart for fluid to drain without the need for medical intervention. She had a 3rd surgery to remove the fluid from her lungs. She also has scar tissue buildup in her lungs as a direct result of her vasculitis coming out of remission. Addy will need continuous and sometimes immediate hospital care due to the nature of her illnesses, including travel out of state to see specialists required to manage her diseases.
Before her diagnosis Addy was not an ill child. With dancing school, playing with cousins and friends, and EVERYTHING else she could get into, Addy was constantly on the move. She would giggle and smile so wide at things many people may take for granted. So such a major and significant diagnosis came as a complete shock. Her care now is around the clock, consisting of weekly doctor's visits, bi weekly lab work, and tons of medication. She isn't able to do many of the things she enjoyed previously due to constant fatigue and pain in addition to dealing with high blood pressure and anemia. It's very difficult for her to move around easily anymore because of fluid retention. In addition to my daughter's condition, my son has a muscle wasting disease, Becker's Muscular Dystrophy. His prognosis is unpredictable because the disease is progressive and changes as he grows, but he has already begun to feel some affects from it with his kidneys as well. His future could be one where he has to learn how to maneuver in life being wheelchair bound.
Due to the care my daughter has to now receive I am no longer able to work and had to take a leave of absence from teaching, which has put an enormous financial strain on my family. There is very little money coming in now making it difficult to pay rent, utilities, and purchase food, medications or medical supplies that aren't covered by insurance. Our need is immediate - bills are becoming extremely past due and at this moment I have no idea how I will be able to pay them. We are facing the hardest time of our lives as a family, but what allows me to keep going is my children! Before her diagnosis, my daughter was full of energy and absolutely loved dancing, playing, and being a little kid. In spite of all the difficulties she is facing at such a young age, she still manages to not only smile bright, but make those she comes in contact with do the same! My son has grown so much during both his and his sister's ordeal. He has shown me what it means to stay positive in spite of the darkness you are facing. He is such a wise and calm child, and deserves every opportunity to continue to grow and determine who he will become as a young man. All I want to be able to do is take care of them both without worrying about how I am going to do so. Please consider donating and sharing my daughter’s story. Both is greatly appreciated!
