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Liver Disease Information

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Honor Wall Stories

Read how these people dealt with their particular liver disease in their own way. Select the type of liver disease to read each story.


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Aiden Simms Story

3 and a half years ago I was born with a rare liver disease called Ornithine Transcarbamylase (OTC) Deficiency. In simple terms, my liver was missing a very important enzyme which is needed to help my body process ammonia which is the by-product of protein. If this ammonia is not removed from the body, high levels of ammonia build up in the blood, which can travel to the brain resulting in coma, brain damage and death. This disorder occurs in about 1 in 80,000 births and is typically more common in boys whose mothers carry the gene. However, one-third of males born with this disorder have a new gene mutation, which was how I got it. For two years the disorder was managed with medication and a strict, plant-based protein diet. Even with the medicines and being watched closely by Mount Sinai’s renowned metabolic team, my ammonia levels would unpredictably spike and so it was decided that I needed a liver transplant. I underwent my first liver transplant on June 5, 2013, but due to complications within the first six weeks, three months later, I received a second liver on September 1, 2013. I am happy to say that I am doing well today. I was able to participate in this year’s Liver Life Walk NYC with Mount Sinai which was awesome. I was able to go to Camp Sunshine this summer which provides a free camp experience to children with life-threatening illnesses as well as parents and caregivers. I got to do water activities, arts & crafts, story time and had so much fun just running around with the other kids. Also, for the first time, I am able attend school and make friends just like my big brother Simeon. I am very grateful to the donor families for giving me a chance at a better life. I would also like to thank all the supporters of Team Aiden.


Related Terms: OTC Deficiency, Liver Transplant, Liver Disease

Page updated: January 29th, 2016

 

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