Lydia's Sickle Cell Medical Fund
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I'll never forget the story my mom told me of the day she learned I have Sickle Cell Anemia SS, a chronic, sometimes terminal genetic blood disease. I was only two months old, but for some reason, I wouldn't stop crying. These cries weren't normal cries, no, the screams of an infant enduring a Sickle Cell pain crisis are the type of screams that haunt a mother's dreams...the type of screams and cries of pain that once you hear, you'll never forget. There she was, a young single mother doing everything she could for her daughter, and then she learns her child has a disease with no cure—a disease that had claimed the life of her childhood friend and causes the most unspeakable pain and horrific complications you'd never want anyone to endure...most of all your only child. My Mom told me that on that day she felt so afraid for me and a deep sadness overcame her, and then the tears began to flow and flow. While she was outside of the doctor's office crying, a sweet older woman approached her and told her not to cry, or be sad or fear whatsoever for me because the LORD had a special purpose for me and He would always be with me. On that day, a Sickle Cell Warrior Princess was born.
My name is Lydia Mays, and I would like the world to know me as a Sickle Cell Warrior Princess. I was born with Sickle Cell Anemia, and diagnosed with it at only two months of age. Sickle Cell Anemia (SS) is a genetic blood disease that causes blood cells to be abnormally shaped, and this abnormality causes my blood to be very inefficient in supplying oxygen and proper blood flow throughout my entire body. Normal blood cells are shaped like doughnuts, but mine are shaped like a half-moons or "sickles." Because of the distorted shape of my blood cells, blood flow is very difficult and cells often become blocked in any joint or part of the body that bends...this causes the most excruciating pain, swelling, and crisis situation for my entire body, and it's called a Sickle Cell Crisis.
Some Sickle Cell Warriors have pain crises only a few times a year, while others like me have pain and complications every single day. I wear oxygen because when my body goes into crisis mode, it happens so quickly that my oxygen levels drop to fatal ranges. I also have home health care, and my nurse sees me once a week unless I'm in crisis and then I need more visits. In addition to home healthcare and my home and portable oxygen, I also see my Hematologist (that's my Sickle Cell specialist) every week for blood work and labs at the Infusion Clinic, and I also have a bone doctor due to worsening bone deterioration (sickle cells also attack, kill, and eat away at bones and organs during these crises). Finally, I also have to see a Gastroenterologist for my second chronic illness, gastroparesis. I have four Doctors in total, and three of them are specialty physicians.
Last year alone I had six surgeries and I stopped counting the number of blood transfusions I had had, once I reached receiving 100 units (pints) of blood as a teenager. I'll be 35 this July, and I've received around 500 units of blood in my lifetime. Unlike regular doctors, specialty doctors have specialty copays which are higher. I'm blessed to have a caring, compassionate medical team, however, copays, deductibles, non-coverages, and everyday life expenses combined have been more than stressful at times. Just three weeks ago I was hospitalized with a blood clot in my leg and I received four blood transfusions and had serious gastroparesis complications that caused me to vomit so violently I ruptured blood vessels in both my eyes. I've lost over seventy pounds from severe vomiting and malnutrition from gastroparesis, a condition that causes me not to be able to process foods normally. Gastroparesis means delayed stomach motility, or emptying, and my stomach will hold foods for over 6-8 hours without digesting it or moving throughout the intestines like the normal digestion process. Treatment is simply trying to find foods that process easily, which for me is a whole food, plant based diet. I juice the majority of my meals so I can absorb vitamins and minerals but keeping weight on is a challenge.
My husband lost his job unexpectedly this year, and although God has blessed him with another great job, the sudden stop in his insurance and access to our flexible spending account monies for co-pays has put us in a serious, negative financial position. I have two hospital bills that just arrived, plus needs for co-pays for four doctor appointments this month. This financial need is immediate and urgent, and my husband and I consider any help a miracle. If you're unable to give financially, we are always in need of prayers and suggestions for programs assisting the chronically ill or disabled. For all the latest news on me, my love and my life as a Sickle Cell Warrior Princess, please visit and "like" my Facebook page, “Made by Hope.” You can find me by searching @SickleCellWarriorPrincess on Facebook. I love you all to the moon and back, and I thank you for being my blessings!
~Lydia, your Sickle Cell Warrior Princess~
My name is Lydia Mays, and I would like the world to know me as a Sickle Cell Warrior Princess. I was born with Sickle Cell Anemia, and diagnosed with it at only two months of age. Sickle Cell Anemia (SS) is a genetic blood disease that causes blood cells to be abnormally shaped, and this abnormality causes my blood to be very inefficient in supplying oxygen and proper blood flow throughout my entire body. Normal blood cells are shaped like doughnuts, but mine are shaped like a half-moons or "sickles." Because of the distorted shape of my blood cells, blood flow is very difficult and cells often become blocked in any joint or part of the body that bends...this causes the most excruciating pain, swelling, and crisis situation for my entire body, and it's called a Sickle Cell Crisis.
Some Sickle Cell Warriors have pain crises only a few times a year, while others like me have pain and complications every single day. I wear oxygen because when my body goes into crisis mode, it happens so quickly that my oxygen levels drop to fatal ranges. I also have home health care, and my nurse sees me once a week unless I'm in crisis and then I need more visits. In addition to home healthcare and my home and portable oxygen, I also see my Hematologist (that's my Sickle Cell specialist) every week for blood work and labs at the Infusion Clinic, and I also have a bone doctor due to worsening bone deterioration (sickle cells also attack, kill, and eat away at bones and organs during these crises). Finally, I also have to see a Gastroenterologist for my second chronic illness, gastroparesis. I have four Doctors in total, and three of them are specialty physicians.
Last year alone I had six surgeries and I stopped counting the number of blood transfusions I had had, once I reached receiving 100 units (pints) of blood as a teenager. I'll be 35 this July, and I've received around 500 units of blood in my lifetime. Unlike regular doctors, specialty doctors have specialty copays which are higher. I'm blessed to have a caring, compassionate medical team, however, copays, deductibles, non-coverages, and everyday life expenses combined have been more than stressful at times. Just three weeks ago I was hospitalized with a blood clot in my leg and I received four blood transfusions and had serious gastroparesis complications that caused me to vomit so violently I ruptured blood vessels in both my eyes. I've lost over seventy pounds from severe vomiting and malnutrition from gastroparesis, a condition that causes me not to be able to process foods normally. Gastroparesis means delayed stomach motility, or emptying, and my stomach will hold foods for over 6-8 hours without digesting it or moving throughout the intestines like the normal digestion process. Treatment is simply trying to find foods that process easily, which for me is a whole food, plant based diet. I juice the majority of my meals so I can absorb vitamins and minerals but keeping weight on is a challenge.
My husband lost his job unexpectedly this year, and although God has blessed him with another great job, the sudden stop in his insurance and access to our flexible spending account monies for co-pays has put us in a serious, negative financial position. I have two hospital bills that just arrived, plus needs for co-pays for four doctor appointments this month. This financial need is immediate and urgent, and my husband and I consider any help a miracle. If you're unable to give financially, we are always in need of prayers and suggestions for programs assisting the chronically ill or disabled. For all the latest news on me, my love and my life as a Sickle Cell Warrior Princess, please visit and "like" my Facebook page, “Made by Hope.” You can find me by searching @SickleCellWarriorPrincess on Facebook. I love you all to the moon and back, and I thank you for being my blessings!
~Lydia, your Sickle Cell Warrior Princess~
Organizer
Lydia Denise Mays
Organizer
Montevallo, AL
