Mother reveals ‘devastating’ moment she learnt her son could die in two  years after being diagnosed with motor neurone disease at age 30

A mother has opened up about the ‘devastating’ moment her son was diagnosed with a deadly disease at age 30, and was given just two years to live.

Vogue Williams met with Sue and her son Alex, now 33, at his home in Forest Hill, South London for The Mail’s new podcast, The Apple & The Tree – a show which unearths candid conversations between parents and their adult children about subjects they’ve rarely, if ever, talked about.

In this episode, Sue, a mother-of-two to brothers Alex and James, spoke on the ‘difficult’ moment her youngest son Alex was diagnosed with motor neurone disease – an uncommon condition that causes the brain and nerves to weaken over time and which eventually leads to death.

At the time of his diagnosis Alex, who now uses a wheelchair, was given a ’50/50′ chance of being alive in two years. 

Sue recalled what happened when she received the life-changing news: ‘Um you [Alex] called us and you said, “I’ll, I’ll, I’ll call you when I’m home”.

At the time of his diagnosis Alex, who now uses a wheelchair, was given a ’50/50′ chance of being alive in two years

‘And I think you called us about three o’clock that afternoon. And then literally, I remember your words saying “I’ve got a 50, 50 chance of being alive in two years time”. ‘I think you [Alex] were angry as well. 

‘And dad and I, I was cleaning granddad’s floor at the time in the kitchen, and I think, “oh dear”. Yeah. And I just can remember how devastating that news was. It’s very difficult’.

Sue, who once lived in pre revolution Tehran as an air hostess for Iran Airways, also relived the ‘worst’ feeling of knowing her son had received the diagnosis without his family by his side.

For the mum, the memory of that day is as vivid as ever. She continued: ‘Craig wasn’t with you, you’d gone on your own, and the consultant told you the diagnosis on your own.

‘You were going to ring us after you’d had your appointment – not knowing that you were going to get the diagnosis, so just to see, just to let us know how the appointment had gone.

‘And I remember I, I thought you would have, you should have finished by about one o’clock and you didn’t get in touch and then time went on’. 

Alex was diagnosed with motor neurone disease after suffering for months with ‘twitches’ and the loss of strength in his hands.

During the episode, Alex wanted to ask his mum about the impact of his MND diagnosis on the family. Sue replied that it had been challenging both ‘mentally’ and physically’.

Sue said the diagnosis was ‘devastating’ and added that the disease had been challenging both ‘mentally’ and ‘physically’ for the entire family

She said: ‘So now we’ve got your diagnosis – motor neuron disease – which has been quite a shock. Um, and quite challenging to deal with mentally and physically for all of us’. 

When Alex asked his mum if she suspected he had MND, she said it crossed her mind but it was something she didn’t want to ‘believe’.

She recalled: ‘I can remember being out walking with my girlfriends… I can remember saying that you’ve been having, you know, problems and you’ve got this twitching and you were waiting for some results, this, that and the other. 

‘And, and I just recall saying, “well, let’s hope it’s not motor neuron disease because you know, that would just be the worst case scenario”.

‘So it had crossed my mind, but it’s one of those things you say, and you don’t really believe it. Do you know what I mean? Because I had an idea that the symptoms, you know, pointed to that being a possibility’. 

Vogue Williams presents The Apple & The Tree – a show which unearths candid conversations between parents and their adult children about subjects they’ve rarely, if ever, talked about

Elsewhere in the podcast things became even more candid when Sue shared her thoughts on learning both her sons were gay.

Responding to Alex’s question about having ‘suspicions’ that her sons were gay before they officially came out, she said: ‘Um, I think my first inclination was James. Yeah, he was 16 and there were just moments.

‘Over a period of time I started to think and I thought, well, I just wanted to know and so I asked him.

‘I thought you [Alex] were just a child having fun. Dancing to Steps, doing all the dance moves and looking at the camera like I think I’m a model. Yeah, but Alex, I thought you… I thought you were just a child having fun’.

Alex said he came out to a group of friends during a game – a moment that left them all in shock.

He revealed: ‘We were actually playing a drinking game I think we were playing I Have Never, where you say stuff you’ve never done. 

‘And um someone said something like, “I’ve never kissed a man”. And I was just like, ah, screw it. And I was just, “I have”. And they were like, “oh my God”, like, really shocked’.

Before the end of the podcast he left a word of advice for viewers, telling them to ‘make more mistakes’ in their youth.

He added: ‘I think that part of my own advice would be to make more mistakes and take more risks when I was younger. 

‘Because I think I’ve always been a bit scared of making mistakes – but maybe that’s come from me’.

Listen to the interview in full on The Apple & The Tree podcast on the Mail Podcast hub, Spotify and Apple Podcasts. New episodes released every Friday.