Lifting Up Faizan’s Voice

ACPA MekanicACPA Family Services, Awareness, Community Stories, Fundraising

Faizan Sheikh has Trisomy 18 which is known as Edwards syndrome, but Faizan’s condition is a bit rarer. Instead of having an extra chromosome 18 in all of his cells, he has them in only some of his cells, which is referred to as Mosiac Edwards syndrome.

Faizan was a very sick child who had to undergo numerous operations. He was referred to a respite place called the Francis House Children’s Hospice for children who have life-threatening conditions. Faizan recalls that time, “I struggled in my early days. I had a nasogastric tube inserted into my nose, down through my esophagus, and into my stomach. This would allow me to have my food and medication. While I was in the hospital, the doctors advised my parents that I had a shortened life expectancy. When I was in Francis House, I kept crying and throwing up. I had many trips to the hospital, each for a different reason. My parents were with me all the way.”

Part of the problem for Faizan was that he was struggling to grow. He was given a growth hormone injection to increase his height which exacerbated a pre-existing scoliosis (curvature of the spine) condition. This caused walking long distances to be physically exhausting and a wheelchair was sometimes required.  Faizan describes this as being an isolating experience. “One of the disturbing things a doctor said to my mum was, ‘YOUR SON WILL NEVER WIN A RACE!’” A crushing thing for a young boy to hear.

Since the age of three, along with managing this condition, Faizan has lived with a severe stammer. He struggled to say his own name, seeing numerous speech therapists. Unfortunately, the techniques that they taught were not working for Faizan.

He describes his struggles with speech while in school. “When I went to primary school, I struggled to make friends I was the kid who didn’t really want to speak much. I couldn’t stay silent all my life. I had to speak at one point. When I did speak, the kids would take the mick out of my speech. When I was in class and I would want to say something, I would pinch my leg to get my words out. When it came to school plays, I would get the silent part — only hand movements. They didn’t even let me do the narrative parts because of my stutter. When I moved to high school, it was extremely difficult because I was getting bullied a lot. I remember once in class, I was stammering and this guy danced to my stammer. That was the last straw for me.” Faizan couldn’t stand to be a part of traditional school anymore and dropped out – it was the best decision for him.

“When I dropped out of school then my life totally changed forever. My amazing mother, who is a blessing to me, took me to the non-profit, The Starfish Project. There they taught me this wonderful technique, which helped me gain control of my stammer. I was confident enough to stand at the front of the room to say my name. I finally did it! I said my name without stammering.”

After leaving The Starfish Project, Faizan gathered his newfound confidence, kept his head held high, and tried to do everything that he previously felt he couldn’t do. “I wanted to order my own food. I wanted to make calls to my grandparents.”

He realized that his journey was just beginning. Faizan explains, “I went on BBC Radio Manchester, Manchester Evening News, NWT, and the Granada Reports. I want this journey to continue where I do amazing things. I want to bring change back. I want to inspire people to use their voice. My message to people is: Don’t let your stammer or disability define who you are. This is a message to the younger people as well. Why try to fit in when YOU were born to stand out. I feel like it’s so important to raise awareness about disability and stammering. I just want to change people’s lives and help people find their voices.”