All For Amaria
Amaria is my little sister. She is 9 years old. She has been in and out of the hospital for the past two and a half years. She has not had a normal childhood by any means. Doctors could not diagnose her and she has been progressively getting worse. She would have seizures and inability to swallow. She had to get a G tube to eat. She has not been able to learn and develop her brain. Nobody could figure out why these things were occurring. We recently ran some tests and got the results back on February 2, 2018. She was positive for Niemann Pick Disease Type C. This disease is a rare lysosomal storage disease that is caused by genetic mutation. This disease prevents proper metabolization of cholesterol and other lipids. This results in the build up of cholesterol in the liver and spleen while other lipids build up in excess in the brain. This has caused several symptoms for Amaria. This disease has only been diagnosed 500 times worldwide. There is no known cure for this disease and it is ALWAYS FATAL. She is expected to pass away between ages 12 and 20. The only way she can live to adulthood is if she receives some form of treatment. My family has established getting my sister treatment. Every two weeks she flies to Chicago, where I am currently going to school, and is treated at RUSH hospital. This has been a blessing. I'm not sure what the plan going forward is as far as where the permanent relocation will be. I an grateful for all of the donations as it has helped my family be able to begin Amaria's treatment. PLEASE HELP. If there is anything you can give financially please do so. If not all prayers will be highly appreciated.
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