Belfast Telegraph

Northern Ireland dad Stephen says telling kids of his motor neurone disease 'one of the hardest things I’ve ever done'

By Allan Preston

A father-of-three diagnosed with motor neurone disease (MND) has helped to raise more than £15,000 for charity ahead of a skydive this weekend.

Stephen Bell was shocked to his core after learning he had the degenerative condition in May.

The 48-year-old chartered surveyor said wife Michelle and sons Johnny (20), Sam (18) and Jack (16) helped him get over the initial blow, as did keeping busy with swimming and cycling.

"I was diagnosed on May 19, but as two of my boys were doing their exams I decided not to say anything until the end of June," he told this newspaper.

"We went on a family holiday to Mexico... I thought it would be a bit better to process it there.

"Telling them was one of the hardest things I've ever done, but they're coping okay.

"One's at Dundee University, starting his third year, another has just started at Northumbria University and the 16-year-old is in Bangor Grammar.

"They have their moments like me, but I wanted them to live normally after the initial fear and sadness. I'm really inspired by how brave they've been.

"It's been really difficult - thinking about the future is hard, but it's about not looking too far ahead and enjoying the time we have together, which everybody should do. My kids probably appreciate me more now."

MND, also known as amyotrophic lateral sclerosis (ALS), affects the nerves in the brain and spinal cord, causing muscles to weaken, stiffen and waste.

It is a rare, incurable and life-shortening disease. The only medication available extends life by around three months.

Stephen will tomorrow take on a skydive to raise money for the Motor Neurone Disease Association.

Having been sporty his whole life - playing rugby and cricket in his 20s as well as being a keen cyclist and swimmer in recent years - the diagnosis was devastating for the father.

"I was pretty fit for a 48-year-old guy, but I felt something in my left foot wasn't quite right last summer," he said.

"I didn't think about it too much, but it started getting worse in January, so I went to a physio who told me the muscles in my left leg were smaller than in the right."

Stephen was eventually referred to a neurologist who recognised the problem. "It was difficult to process - I even well up thinking about it now," he admitted. "It was tough, especially keeping it from the kids."

After telling his family, Stephen decided to raise money and awareness with a skydive.

"It's something I'd always wanted to do in my 20s, but this put things into perspective," he explained.

"The disease is very rare. My understanding is that MND affects two in every 100,000.

"I'm on a drug that will give me an extra few months, but there's little you can do. Because it's so rare, there's just not as much research into ALS."

The brave father described the support he'd received from the public as "very humbling".

"We did a fundraiser in Bangor's Ballyholme golf club last Saturday, raising over £5,000 that night alone," he said. "A lot of effort has been made to support me and raise awareness.

"These circumstances bring people together. People you haven't seen for years, you end up having a few drinks with.

"Now I've taken myself off for a cruise for a week with my wife and I'm looking forward to Saturday."

Stephen has some difficulty walking, but he retains his upper body strength and has no problem talking.

"Neurologists never give away too much, but the average lifespan for someone with MND is two to five years," he said.

"I have ALS, the most common form of MND. Everybody's different and some people are slow progressors.

"I had tests in June and I'll go back in October to see how much I've deteriorated.

"There is the odd person who gets over five years, like Stephen Hawking. He seems to be original in more ways than one.

"Sport's been fantastic for me. I've been overwhelmed by people saying nice things about me, which I'm not used to."

For more information or to donate see wfundraising/stephen-bell31

Belfast Telegraph

Daily News Headlines Newsletter

Today's news headlines, directly to your inbox.


From Belfast Telegraph