Faizan Sheikh, 18, from Didsbury, Greater Manchester, was born with Mosaic Edwards Syndrome, a form of Trisomy 18, a rare but serious genetic disorder. Alongside this, Mr Sheikh has lived with a stammer since he was a toddler, struggling with his speech that worsened when he was in school because of bullying.
Through a revolutionary stammer management programme, Mr Sheikh has been able to regain control of his life and is now helping others through delivering inspirational speeches in schools and on the radio. Mr Sheikh is using his voice to bring change. He said: “I want the journey I’ve been on to continue. I want to bring change. I want to inspire people to use their voices.
“My message to people is that 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.”
People both in the South Asian community, and in wider society, in general, often don’t talk about disabilities, for various reasons, such as ‘shame culture’, which is why Mr Sheikh needs to spread his story.
Mr Sheikh was in-and-out of the hospital from a very young age, being referred to the Francis House Children’s Hospice in his hometown which provides respite care, home care, sibling support, end of life care and emotional and bereavement support to families. Mr Sheikh was given a life expectancy of two by healthcare professionals when he was born, which he has knocked out of the park.
Talking about his traumatic childhood experience, Mr Sheikh said: “When I was born, the doctors told my parents that they could expect me to live to around two years old. I have proven them wrong.”
As part of his condition, Mr Sheikh struggled to grow during his childhood, having to have a growth hormone injection to increase his height. Unfortunately, it exacerbated his pre-existing scoliosis. “Due to my condition, I struggle to walk long distances as I get tired”, he said. “I had to be pushed in a wheelchair if I was going long distances, which was an isolating experience.”
At the age of three, Mr Sheikh developed a stammer, a common speech problem in childhood that can develop into adulthood. Stammering varies in severity from person to person, and from situation to situation. Someone might have periods of stammering followed by times when they speak relatively fluently.
Stammering is when a person repeats sounds or syllables, makes sounds longer, or when a word gets stuck or does not come out at all. Statistics published by the NHS says that around 1 in 12 young people will go through a phase of stammering with around 2 in 3 children growing out of it. It is also estimated that stammering affects around 1 in 100 adults, with men being more likely to stammer than women.
Mr Sheikh said: “I have been through many operations and seen many speech therapists over the years, so I’ve gone through a lot. One disturbing experience I’ve gone through is when I overheard a doctor or nurse saying that I ‘would never win a race’ which I was devasted by. After recovering from an operation on my spine in 2017, I took part in a 100 metres sports day race and I won, proving them wrong again.”
Secondary school was particularly hard for Mr Sheikh as he was badly bullied by classmates. “I was too scared to speak in class and when I did, I was badly made fun of because of it. One boy would even dance to the beat of my stammer, and it was so hard and traumatic.”
Mr Sheikh had visited numerous speech therapists throughout the years, but each time was unsuccessful in helping him. It wasn’t until two years ago, at the age of sixteen when his mum Taiba booked him on a three-day intensive course in London with the charity, The Starfish Project, that he was finally able to take control of his stammer and say his name and address for the first time.
He said: “It is the best thing to ever have happened to me, I don’t have to get other people to talk for me, I can do things like order a takeaway over the phone now, which I couldn’t do before.”
The Starfish Project taught Mr Sheikh breathing techniques that involve breathing from the diaphragm to help get his words out. There is no cure for stammering or stuttering but with the training and tools provided by the non-profit, people are given the confidence to control their stammer.
Mr Sheikh, who studied Hospitality and Catering at college, now works with his dad at a freight hauling company, which he enjoys. He also gives out motivational speeches to schools and other organisations, telling his story and helping others be more comfortable in their skin.
On 9 November Mr Sheikh is giving a presentation and chairing multiple sessions at the Learning Disabilities and Autism: Equality and Empowerment Conference at the Manchester Conference Centre. He will discuss his lived experience and how he has overcome his disability.
Marcus Rashford, the Manchester United footballer who is known for his dedication to charity work and his campaign for Free School Meals for children during the pandemic, visited the Francis House Children’s Hospice last year. Mr Sheikh interviewed Mr Rashford during his visit, asking him about his goal at one of his recent matches. Mr Sheikh said: “It was a dream come true meeting Marcus Rashford. I was so nervous meeting him, but he is very nice and very caring.
“When I was asking him a question, he put his hand on my shoulder to comfort me and take the anxiety off, which helped me to get my words out. It was such an amazing experience and a privilege to meet him.”
Giving advice to young people who may be going through a similar experience as he did, Mr Sheikh said: “If you are going through something, tell someone. Never bottle something up and keep it to yourself. Remember that you are not alone, and other people are going through the same situation all around the world.
“Don’t let bullies control your life. There is a saying that I really like, and it goes ‘If you are ever being challenged don’t say why me? Say try me.’”
Discussing mental health is also important to Mr Sheikh. When he was getting bullied, his mental health deteriorated to the point that he was struggling to eat or drink, but now he can speak openly about what he went through. “I have grown a thick skin now, so I am able to take whatever people say or think about me. People need to open up about what they are going through, and never hide away.”