Vivek's Story

Vivek's Story for Rainbows Hospice for Children and Young People

Vivek Gohil knows what it is to go up against the odds – and win through. Vivek, was diagnosed at the age of 10 with Duchenne Muscular Dystrophy. In addition, he has had to cope with Haemophilia since birth.

Once a physically active youngster, his condition has gradually deteriorated with an increasing loss of mobility and he has been using a wheelchair for over 17 years. And yet, he says he has finally found a level of acceptance and contentment. 

“In fact,” he says, “I’ve never been happier.” But that, he adds, took time – and a painful journey of self-discovery. Now he wants to help others in similar situations, using his experiences and what he has learned along the way.

“It was about taking a degree of control,” he says. “That only came in the last few years, after much reflection and having studied psychology. And then I started campaigning. Not just for myself, but for others in similar situations. Perhaps it was a way of channelling my frustration. I had found my voice.”

Indeed, he now regularly speaks publically to young people experiencing similar challenges, offering them encouragement. But he also talks to politicians at Westminster and at national conferences too about disability and access issues. And he has campaigned successfully on a range of issues. From pressing cinemas for better access and seating for disabled people, to working with technology giants Microsoft to develop the latest assisted technology for gaming.

Earlier this year as the Muscular Dystrophy UK Trailblazers gaming consultant, he was the first person called upon to test the latest assistive device called the Xbox Adaptive Controller to create an inclusive way for disabled gamers to continue playing on the Xbox.

He is excited too about the recent contact developed with international best-selling author Anthony Horowitz, who approached Vivek through Muscular Dystrophy UK and the two men met earlier this year. The author wanted to know more about Vivek and aims to base a character on him for his forthcoming blockbuster series of adventure stories.

“I think the character will be a computer hacker in a wheelchair, a sort of side-kick for the hero,” says Vivek, with a wry smile. “And that’s got to be good. There aren’t enough role models for disabled people,” he adds with a defiant gaze.

He admits two of his biggest heroes have been the late Stephen Hawking and Professor Xavier, leader of the X-Men, both wheelchair users and inspirational in their own ways. 

“I love comics – I don’t think there’s a single one in Leicester I haven’t read,” he adds with a twinkle in his eye. But he is serious. “Comics and their superheroes inspire me,” he adds.

“Many of the Marvel characters, for example, have overcome disabilities to become superheroes.” And he smiles. “Comics have allowed me to escape my own situation. At least for a while.”

Vivek today is, by his own admission, a far cry from the shy, confused and frustrated boy struggling to come to terms with what was happening to him. His parents divorced soon after his diagnosis, something Vivek has no regrets about. “I think it was for the best. I don’t think my father could accept my illness,” he adds, something he believes was amplified by potential stigmas within some Asian communities around disability. Since then his mother Manjula, a trained nurse, has been his main carer. “She saved my life,” he says quite simply.

Vivek first came to Rainbows shortly after the diagnosis. And it helped. But he was fighting another battle. 

“I was very angry about my condition as a boy,” he admits. “At first I didn’t realise what was happening to me. No-one did. Not even at school. I was aware that I was different but wasn’t really sure why. Simple things became more difficult. I even struggled to raise my hand in class,” he says.

“I was resentful, jealous of those around me, even my sister, who could lead normal active lives, while mine seemed to be becoming more difficult,” he adds.

For many years he withdrew and was painfully shy, something he knows was difficult for his mother to see, or know how to counter. Stays at Rainbows for care, therapy and respite for his mother and sister Radha were, at the time, a lifeline. But he wishes he had known then what he knows now: To understand his condition and focus on the positives.

He admits he stubbornly fought against treatments that would have helped him, particularly physiotherapy. “I’d like to be able to go back in time and talk to the boy I was. I think I’d be able to help him cope better,” he says.

That’s why he is passionate today about passing on his experience of Duchenne to others –and trying to improve things.

“Campaigning drives me – and I hope it inspires others. I want to encourage people facing similar challenges to be positive. And I want people to recognise what disabled people CAN do, rather than what they can’t,” he adds.

He has taken part in the Action Duchenne conference 2017 in Birmingham, to help youngsters with similar conditions. And though Vivek and his family have been supported by Rainbows for many years, his visits to the hospice now focus on talking to and encouraging other youngsters facing similar challenges.

Vivek also sits on the newly-formed East Midlands Transitions Regional Action Group, as Co-Chair, which aims to improve the process of moving children to adult services, ensuring they receive the right support. And he is a conscientious and talented blogger, with a significant following.
So where does he find his strength? “Faith is important – and I have faith,” he says. “But not necessarily in a religious sense, more in terms of the forces all around us and the power of the mind,” he adds. “A bit like the Force in Star Wars. And a sense of humour helps.” He 
smiles again.

He is determined to remain active and make the most of his time, supporting and inspiring others, campaigning for a better quality of life for those disadvantaged through disability and the way in which they are viewed by society. But he is passionate about promoting the positives.
And how does he see himself? Vivek describes himself as a blogger, speaker, advocate and gamer, who just happens to have Duchenne Muscular Dystrophy 
and Haemophilia.

His ultimate ambition: To drive forward the development of a voice-activated, high-tech wheelchair. The technology is there, he insists, though not necessarily the commercial will. Yet those who know him wouldn’t be a bit surprised to see Vivek blaze a trail and actually achieve that dream.

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