her brother Mehdi lived with neurofibromatosis

“As a child, Mehdi was always a creative and imaginative soul. He enjoyed dressing up and disguising himself to scare me. His favorite time of the year was Halloween. His favorite artist was Michael Jackson. At 3 years old, he could do the moonwalk.

Mehdi was diagnosed with neurofibromatosis (NF) when he was a baby. NF is a genetic disorder that refers to three different conditions involving the development of tumors that may affect the brain, spinal cord, and the nerves that send signals between the brain and spinal cord, and all other parts of the body.

When he was 12, he had a brain tumor that turned out to be benign. The doctor was able to remove it. He never complained once. He had another in his torso that was taken out too. Later on, a sarcoma grew inside of his left thigh, this time, he didn’t take care of it right away. His leg had swollen. By the time my parents learned about it, it was too late. The tumor had grown too big, and it was no longer operable. We were devastated. We had no idea he would not survive. I miss him so much.

In 2007, Mehdi moved to LA to live with me, where he attended the NY Film Academy School. Initially, he wanted to be an actor, then switched to directing. He received his Bachelor of Fine Arts in Acting for Film in September 2015. Before graduation, he made a short video about living with NF. I watched it with tears in my eyes, filled with pride for everything my brother had accomplished in such a short amount of time. I knew he was destined for greatness. Sadly, Mehdi’s life was cut tragically short, and he passed away on January 18th, 2018, at the age of 28. 

In memory of my angel brother, I want to help others realize how lethal NF can be. I am on the European board of directors for the Children’s Tumor Foundation. Our goal is to spread awareness and raise funds to find a cure.

Mehdi was a hero, NF Avenger, a handsome young man adored by so many. Gone way too soon.”

 Samia, Mehdi’s sister.

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