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How Rare Disease Took My Life

Rare disease

My name is Mahmoud. I am 13 years old and at 7 months old, I became weak and lost balance. I experienced weakness in all my muscles. My mom took me to hospitals and doctors. Everyone guessed something different until I turned 4 yrs old and my mom had another baby. The baby lived a normal life and walked until he turned 2 yrs old and the same thing happened to him. He lost all his skills, and we had to use strollers. Mom worked very hard with us and did her best to let us be as normal as others.

Achieving a lot with Rare Disease

I never talked or walked. I couldn't write or use my hands. My brother's disability was better than mine. He speaks with some difficulties, he is toilet independent, and he can stand with support. My mom let us join a school because we were smart. Thank God this disease doesn't touch the brain! We both achieved a lot.

Missing my mom & brother

In 2017, I had a major operation because I had a dislocation. I had to wear a cast like pants and stay in bed for 45 days. I became weaker and I stayed for a long time in the hospital because I had a very bad lung infection. Everyone tried their best to keep me alive, but after one year almost before two months, I passed away. I achieved a lot in my life in school with my mom and my brother. I am doing very well up in heaven. Not all people with special needs can continue life, but they can leave something good behind them. Their history, achievements, memories. The only this is, I miss my mom and my little brother, but I believe that mom will continue as I know her with strong and positive energy. I love you, mom!

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