Ben Morris has had spinal muscular atrophy all his life. But the 15-year-old, from Middleleaze, refuses to let it get the better of him. He talks to MARION SAUVEBOIS about his experiences  of the condition and his ambitions for a future where there is better understanding of people living with disabilities

BEN Morris is larking about in the snug living room, full of pent-up energy after a long day at school.

When his father pleads with him to settle down the cheeky teenager turns to him with his best contrite expression.

Before long the 15-year-old is rocking his wheelchair back and forth, catching himself inches from the television behind him, all the while chattering away. He pauses mid-sentence to ask for help re-adjusting his sling only to pick up his train of thought again without a second thought to this minor disruption. Later, when his father scratches an itch on his face, he continues unperturbed.

This is life with spinal muscular atrophy and Ben has never known any different.

“This is my normal,” says the Commonweal School student breezily. “It’s just a different type of normal.”

Ben’s inability to crawl or hold himself up by the time he was six months old were the first warning signs. But his parents’ concerns were brushed off by well-meaning friends and family pointing out that every child developed at their own pace.

Their misgivings were confirmed at Ben’s eight-month check-up when he was referred to Princess Margaret Hospital.

Further appointments followed at John Radcliffe in Oxford including a DNA test.

Three months later, on October 15, 2011 Ben was diagnosed with spinal muscular atrophy, a rare genetic disease that causes muscle weakness and progressive loss of movement.

Doctors were unable to determine whether Ben was born with the fatal Type One strand, which children rarely survive beyond the age of two, or the severely disabling but non life-threatening Type 2.

“We had to wait through the winter to find out,” says his father, Doug, 55, of Middleleaze.

“We had no choice. We did what we could to learn about SMA. The following February we had another appointment and the neurologist looked at him and said, ‘Ben’s a survivor’.

Over the next two years, the family attended 271 hospital, GP and social care appointments.

SMA is caused by deterioration in the nerve cells, known as motor neurones, connecting the brain and spinal cord to the body’s muscles.

As the link between the nerves and muscles breaks down, the muscles used for anything from walking and sitting up to moving the head become progressively weaker and shrink. The disorder does not affect sufferers’ mental abilities.

By the time he was four, Ben had undergone four operations including one to cut tendons in his hands and help him to straighten his fingers and another on his stomach to prevent him from being sick.

At the age of eight his spine began to curve leaving him in agonising pain – but for months Ben hid his plight from his family as he was afraid of another round of surgery.

Two years later he was diagnosed with scoliosis and two titanium rods were fused to his spine to allow him to hold himself up and alleviate pressure on his organs.

Ben is not technically paralysed and can still move his legs, hands and fingers to some degree – he manoeuvres his electric wheelchair by brushing a joystick with his left thumb. But these movements are imperceptible and too negligible to have any real effect. He requires round-the clock care to perform the simplest daily tasks such as turning the pages of a book, washing, dressing himself or eating.

“It didn’t bother me as a child,” he explains matter-of-factly before breaking into a warm smile. “I didn’t know any different. But I did ask my parents frequently, ‘when can I play football?’. They would say, ‘when the doctors find a cure’.

“I did have a blip when I was younger where I thought ‘why me?’. I think I got over that. It can be quite frustrating not being able to scratch an itch or eat by myself. You work your way around things. You can’t let things be a barrier. You always have to be on the ball. You learn a lot when you’re disabled, about life, about society.”

As he struggles to chew and swallow, a feeding tube was inserted in his stomach to allow him to receive nutrients.

As a result of SMA, Ben is prone to debilitating chest infections. His respiratory muscles are weakened to such an extent that he needs a ventilator to breathe in his sleep.

Thankfully his condition has plateaued in recent years but his muscle weakness will worsen over time.

Over the years, Ben’s parents and sister Emily have relied on charities such as SMA Support UK and Rainbow Trust for advice, support and respite.

At the age of 11 Ben was invited by The Rainbow Trust to make a presentation about the help he received from the organisation.

The talk inspired Ben to raise awareness of his condition and disability in general and secure critical funding towards research on a national scale.

In 2013, he was featured on the Children In Need appeal and was interviewed on Blue Peter by Lindsay Russell.

He was also invited to attend a reception hosted by Samantha Cameron at Downing Street.

Earlier this year he travelled to Switzerland to share his story with 80 researchers from across the globe at a conference on SMA.

His father had to carry him onto the plane and along 13 rows to his seat.

“I can’t do runs or walks, but I can tell our story and raise awareness of all these different charities that do so much for us,” he says.

Undaunted at the prospect of a life spent relying on others for care and support, Ben is determined to grab every opportunity and fulfil his ambitions of becoming a television presenter and one day competing in the Paralympics in his favourite sport, boccia, a version of lawn bowls.

While he does not allow himself to dream of a cure in his lifetime, he is determined to help sustain research and fight for acceptance and tolerance for the disabled community.

Insensitivity has been a major stumbling block for Ben, whose classmates have taken to teasing him by taking control of his wheelchair’s joystick, his only means of independence.

Next year he will join a national web campaign aiming to change attitudes to disability and break down social barriers.

“There’s a gap in understanding,” he says without a hint of bitterness.

“At school, they see my wheelchair as a toy rather than something that’s my life.

“I think things are improving and perceptions of disabled people have changed but some people still think we’re odd or that we’re not good people, that we shouldn’t be approached.

“But we are normal human beings and we should be treated equally. We should have the same opportunities. That’s my goal.”

To find out more about SMA go to www.smasupportuk.org.uk.

To help support Rainbow Trust Children’s Charity visit rainbowtrust.org.uk.