"Autoimmune Hemolytic Anemia occurs when antibodies directed against the person's own red blood cells (RBCs) cause them to burst (lyse), leading to an insufficient number of oxygen-carrying red blood cells in the circulation. "
This disease has taken such a toll on our sweet baby girl. She is only 13 months and has already been in the hospital multiple times a month, about 25 days total. She has had 8 blood transfusions, been on steroids for going on 4 months now, been poked and prodded by so many doctors and nurses that she is scared of anyone who isn't Mom, Dad or brother. We are currently in New York seeking better care for her and she is receiving that but she is also fighting a cold and still has a very low Hemoglobin count, she is so pale and we are at the doctors office every few days to do a CBC (complete blood count) to check her levels. We are hoping that after she fights this cold, (which she has been dealing with for almost two weeks now, she has a very low immune system as well due to all this) that her numbers will start to rise and hopefully we can see some improvement.
We live in North Dakota and the nearest specialist is a 7 hour drive away. The first time Emma's levels dropped we had no idea what was wrong, her and I had to be life flighted to Fargo, ND to the PICU, there she had three transfusions and multiple different drugs and so many tests and even a lumbar puncture. Our sweet little 10 month old baby girl had to be put under general anesthesia and they had to put a needle in her spinal cord. Since that first hospital stay, she has been in the hospital for 7 different stays, gotten labs done twice weekly for 4 months straight, been on a very high dose of steroids that whole time, 3 ambulance rides, and so much medicine. She is so weak from this disease, at the moment she won't even let me put her down. She won't crawl, she wont put weight on her legs, and her immune system is shot, so a simple cough for someone else turns into what is basically pneumonia for her and sends her numbers plummeting.
All this to say, we are drowning in medical bills, after that many hospital stays, ambulance rides, a life flight across the state, multiple drives 7 hours back and forth from Williston to Fargo, and medicines. Now to top it all off we are looking to move to a different state to ensure good continued medical care for her, so that in itself is a huge expense.
Any help we receive would go towards medical bills, medicine, and our move to a different state with better healthcare than she currently receives in North Dakota.
We are so grateful to all our friends and family for reaching out to see how Emma Grace has been doing. Hopefully she can beat this and it doesn't turn into a chronic disorder.
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