An Edinburgh mum has shared how she 'doesn't know how she'll deal' with telling her children their dad is dying, after he was diagnosed with MND.
Andrew Hogg, 42, was told he had motor neurone disease last month after a 'funny turn' last year saw his condition continue to decline.
Also diagnosed with frontotemporal dementia (FTD), the dad-of-three has now seen huge changes in his condition, with impairments to his speech and movement, as well as becoming more withdrawn.
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Dealing with the devastating news, Andrew's wife, Alex, 36, explained that Andrew has been told he will only have a few years to live.
Becoming increasingly paralysed, Alex told the Daily Record that she has also had to deal with breaking the news to their three children, Lea, 15, Noah, nine, who is autistic, and Gabriel, eight.
She said: "We've been struggling with the diagnosis. I've been trying not to be upset about going from us being a team to just being on my own.
"He's still here, but cognitively he's declining quite quickly, especially in the last week. The boys are too little to explain it properly and my daughter doesn't fully understand – I've been trying to explain it in a delicate way.
"I know the outcome of this – but how do you tell your kids about what's going to happen? I don't know how to deal with that. It just doesn't feel real, or fair."
Taking a 'funny turn' in December 2021, Andrew had begun to mix up his words, and had also gone on to fail a forklift proficiency test at work.
As things progressed, he had become confused in his speech and more absent, with cognitive tests and neurological scans eventually identifying the devastating condition.
On October 21, Alex was told her husband had a combination of FTD and MND. The tragic pairing could be genetic and may have been passed on to his kids, something Alex admits she's "trying not to think about" until tests confirm its cause.
She added: "The consultant says we need to go do genetic testing to determine if it's been genetically inherited, or if it's a genetic fluke. There's implications for the children if it's inherited...which I'm just trying not to think about. I'm just hoping it's a fluke and that it hasn't been passed down."
MND affects two in every 100,000 people in the UK; notable people with the disease include late physicist Stephen Hawking and Scots rugby legend Doddie Weir. Recent research by the University of Glasgow has suggested that former members of the armed forces such as Andy are 50% more likely to develop MND than the average person, though the reason for the link is not clear.
Desperate to prolong Andrew's health and life, Alex has now launched a fundraiser alongside her sister, Nic, in the hope of sending her husband for an experimental treatment.
Although MND is an incurable condition, she explained that they hope it will give Andrew more time to make memories with his children.
Donations would be used to support the dad with clinical trials and non-NHS medications, as well as helping him create precious memories with his kids. Tragically, the couple cancelled their life insurance policy years before, thinking they would never need it.
Alex added: "It's hard, because Andrew comes out with muddled up words – he could be trying to talk about the car and would say 'dishwasher' – and I don't know if he knows what's happening to him. It's so frustrating not knowing if he's trying to fix it inside his head – does he know what he's trying to say? It's like he's locked in there.
"He wants to go to New York, but I don't even know if it's possible for him to do all the things he wants to do. But he understands what's happening to him, he knows what the diagnosis means, and for me it's about prolonging the time he has.
"The only way to do that is with these clinical trials – it is time for us to buy time. The boys are too young to really remember him and I want them to have as long as they can so they get as many memories as possible.
"That's my focus. I'm strong, I can deal with it. I just want the kids to have the best time with him so they will remember."
You can view and donate to the fundraiser for Andrew here.
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