First-year DMU journalism student Dan Ball has a rare genetic condition characterised by progressive muscle weakness and fatigue. But he’s determined to become a journalist. Feature writer Sara Doktorova tells his story.
One afternoon in Burntwood, Staffordshire, at a playground at Ridgeway Primary School, a five-year old Dan Ball was playing around with his friends but then suddenly felt dizzy and tired. He fell to the ground.
A few days later, his parents started to notice him frequently falling and losing balance, he had difficulty with walking, felt tired when performing any physical activity and it took him time to get back up. “My balance wasn’t as good, so I fell over quite a lot,” says Dan today.
Unfortunately, Dan was diagnosed with Duchenne muscular dystrophy at the age of five. His whole family had blood tests to see whether they had that type of gene as well.
Dan Ball today is a 19-year-old, with deep brown curly hair, wearing black glasses, a green sweater, sitting in his wheelchair. He is quiet and serious. He talks slowly but talks a lot while trying to explain his disability.
He says he feels it is “unfair and unlucky,” to have this disease, explaining there is a 25 per cent chance of having this disease in boys and a 50 per cent chance of carrying this disease in females but only boys can have these disability symptoms.
“My mum feels responsible,” says Dan.
Samantha Ball, 52, felt ‘guilty’ as this type of gene runs in her family. A study has shown that females are born with this gene, and their male babies can be born with this disability.
“It’s degenerative so it gets worse over time,” says Dan.
He is the only person in his family who has this disability. “The way it affects me now is worse than in my earlier life,” he adds.
Now he is determined to become a journalist and help people with similar disabilities.
“I want to make a difference for other people through the media,“ says Dan.
“It doesn’t affect my ability to think and speak.”
This disability affects his daily life as he cannot move fully, only his arms and fingers a little bit, but that does not stop him from writing and learning.
His daily life involves having to use a wheelchair all the time, needing care and support from his family and carers to help him wash, get dressed, eat, drink, and go to the toilet. Dan says his access to places is limited as he cannot enter certain areas.
Sita Cicirko and Robbie McNicholas share the caring duties for Dan, an arrangement that allows him to live on campus at DMU.
“I lost the ability to walk when I was 10 years old,” he says.
Dan often felt embarrassed and frustrated that he could not be like everyone else. He says it is a horrible feeling to know he cannot be independent in his life, and that he will become even less independent as the years pass.
He receives preventative treatment to keep him functioning, as all his muscles, lungs and heart are all affected. “I’m on three heart medications now,” says Dan.
He has been receiving steroid treatment for 14 years, with physiotherapy to keep his muscles from tightening. The treatment aims to delay the effects of the disease for as long as possible.
On a scale of one to ten, Dan said his life was an eight on the difficulty scale. “It’s never easy,” he says.
His family, friends, and various service networks provide a lot of support helping him to deal with his life and make it more enjoyable for him.
“It’s very difficult but not impossible to live with this condition,” he says.
The academic side of growing up has not been a problem for Dan, who is an intelligent student. But as he progressed through primary school, then secondary and sixth form at Chase Terrace Academy in Burntwood, it was the social aspect that was difficult, leaving him feeling isolated from his peers.
“I felt like I didn’t fit in and was left out,” he says.
Dan felt discriminated against when people in class would talk behind his back and would be surprised that he could speak. It makes him reflect on the stereotypes people have about disabled people and wheelchairs.
“You can talk to us, we are still humans,” he says forcefully.
He remembers watching an outdated video on Duchenne muscular dystrophy, which made him realise that his lifetime is short and that he had already lived through half of his life, but with the technology and research advancing, people with his type of disability are able to live longer.
He loves watching award-winning movies, with other hobbies including going to the cinema, reading comic books, listening to pop music, and playing competitive wheelchair football.
Dan’s favourite actor is Leonardo DiCaprio, his inspiration is the scientist Stephen Hawking, and, as an avid Spurs fan, his favourite football player is Harry Kane.
His ambition is to change the world, making it a better place by becoming a journalist for social issues.
“I want to learn to be a better journalist,” he says determinedly.
At DMU, Dan has already signed up to contribute to the Demon media magazine, for who he plans to draft more articles.
“I want to get as far into the industry as I can now,” says Dan, with his aim being to build awareness for disability rights and inequality.
“I want to influence public opinion and change people’s mindset on stereotypes,” he says. “My aim is to try to normalise everyone, so that the world is an equal place.”
His ultimate ambition is for people to live with each other harmoniously, regardless of any disability.