The dying dad leaving life lessons for his daughter

It’s heart-rending to think that one day, possibly soon, she will wake up and Daddy will not be there.That’s why Ian is desperate to make sure that if he can’t be there in person, he can at least be there at the touch of a button.

As well as the inevitable ‘talk about boys’, he’s offered his little girl sound advice about money.

‘I’ve worked in finance all my life and I’ve seen how much trouble people can get into with stupid pay-day loans and credit cards,’ he says.

‘So, I’ve shown her how to draw up a budget and given her advice, such as freezing her credit card in a block of ice if she ever gets into financial trouble, so she has time to think about a purchase as the ice melts.’

He says: ‘I want her to blow a bit of the money I leave her on travel or whatever she likes, but I want her to be careful with the rest of it.

‘I’ve talked to her about education. I would really love her to go to university. I want her to aim high. Don’t become a doctor, but be a specialist! Be the very best you can be and make a difference to society.

‘She’s such a headstrong little girl — Catherine jokes that she has ‘leadership qualities’ — that I really think she has the resolve to do something incredible with her life.

‘I’ve given her advice about her first job. I’ve told her that she may have to make lots of cups of tea to begin with and she can’t expect to rise through the ranks too quickly.

‘She has to be confident and full of ideas, but she must learn from her seniors. Hopefully, they will help and guide her.’

As well as practical advice, he is also offering emotional guidance. ‘There are going to be testing times when I’m not here, so I’ve spoken to her about that, too. I’ve said to her: “Mum won’t judge you — whatever the problem is, speak to her.”

‘My dad was always invaluable in that way and I want George to know she must never be afraid to speak to her mum about anything.

‘The hardest video I’ve done so far is telling her about her arrival. How much she was wanted. How much she is loved.’

He pauses and the tears come again. ‘Because none of this [the disease] was ever in our plan.’

Ian and Catherine had been friends for more than 15 years before they started dating. Georgiana was born almost exactly a year after they wed.

Though Ian says he’d never imagined being a father, he was at the birth and was overjoyed.

‘When the midwife said “It’s a girl”, I was over the moon,’ he says. ‘Given our age — we are both 44 —  we thought she would probably be our only child and I was so happy she was a girl. They have a special place in their dad’s heart.’

The couple had great plans for the future: they wanted to build their own dream home and travel the world. But, unbeknown to them, MND was taking hold of Ian.

‘Even before we married, I was getting lots of cramping and twitching in my neck and limbs, but it didn’t bother me much,’ he says.

‘I now know these are the first symptoms, but at the time I had no idea. I was very active — I  used to go to the gym four days a week — and had a good diet. We just got on with life. My GP thought it could be a potassium deficiency.

‘But in 2011 I lost nearly three stone in a matter of weeks, so I knew something wasn’t right. I was referred to a neurologist, who thought it could be a pinched nerve in my neck, and a rheumatologist, who sent me for a battery of tests.

‘When the results came back, she said: ‘I’ve got some really good news — it’s not cancer.’ I burst into tears. I was relieved, but later worried that if it wasn’t cancer, it could be something worse.’

It was only when Ian was referred to Professor Pam Shaw, who specialises in MND, that he realised something could be seriously wrong.

‘When I Googled MND, I found all these horrendous things about it being terminal and people dying of it within two years.

‘I thought: “Could this be it?” I could relate to some of the symptoms, but I was careful not to put a label on it until someone confirmed it.

‘And as each test result came back negative, I began to hope it could be something else.’

What Ian didn’t realise is that there is no single test for MND: it is diagnosed through a process of elimination. After months of testing, he and Catherine were called to see Professor Shaw in September 2012. It was a month before Ian’s 43rd birthday.

‘I’d tried to put it to the back of my mind, but deep down, I knew I was in trouble,’ says Ian. ‘When we went into the consulting room, there were lots of posters on the wall about MND. I said to Catherine: “She’s going to tell me I’ve got MND.” And she did.

‘Neither of were prepared for it. We were convinced it was something else.

‘I was told there was no treatment, it was progressive and terminal, so it would get worse and I would die.

‘My mind raced to a neighbour of my brother’s who had MND and was dead within months. Would that be me? How long did I have?  But Professor Shaw has never given me a time limit.

‘My GP said it would be within five years at best and three years at worst. I’ve had it for five years, so I’ve no idea how long I have left. I’ve felt a marked decline in the past six months.

‘On the day of the diagnosis I was in shock. Catherine and I were hugging each other and crying. My one over-riding thought was: “I need to be with George.”

‘We went straight to her nursery and picked her up and the three of us just hugged. She didn’t understand what was going on — she still doesn’t. But I sobbed for days.’

Though 90 per cent of the 5,000 MND cases in Britain are seemingly random, the other 10 per cent are thought to be genetic. There’s no suggestion George will inherit her father’s disease, but he is fearful.

‘I sometimes watch her when she is sleeping and she twitches, just like anyone does in their sleep, and my heart sinks.

‘I always say to Professor Shaw: “Don’t worry about finding a cure for me. It’s too late. But please, you’ve got 30 years to find a cure for my daughter.” ’

He admits that the hardest part of his illness has been the role reversal for father and daughter.

‘She knows my muscles aren’t good and I can’t do what other daddies do. I can’t pick up my little girl and give her a hug because I’m too weak, which is really hard for me. I can’t even pick up a kettle to make a cup of tea.

‘She will often fetch things for me. What is really upsetting is if I fall over and can’t get up again. She rushes over and is just beside herself. She gets distressed because she doesn’t understand what to do.

‘As a result of my illness, she is becoming a very caring child. Her nursery told us that whenever a child falls over, George is the first one to run over and pick them up.

‘The nursery is also teaching her how to ring the emergency services if she sees me fall and Catherine or my carer are not around. But that’s a lot of responsibility for a three-year-old.’

As well as George, there  is also the impact the illness has had on his five-year marriage to Catherine.

She arrives from work towards the end of our interview and admits, with disarming honesty, how difficult she is finding the transition from wife to carer.

‘It’s been really hard. There are days I look forward to going away on business because it means I’ll get a good night’s sleep for once,’ she says. ‘People think that when one of you has a terminal illness, you spend your days telling each other “I love you!”, but it’s not like that.


‘The things that annoy you about each other still annoy you. But deep down you love one another. I try not to think about the future too much because it’s too hard.’

Ian agrees: ‘There are days when I say to Catherine: “That’s it, I want out. I’ve had enough.” That really upsets her.

‘She’s my soulmate and she knows I don’t mean it, but it can be so frustrating because I can’t do any of the simple things I used to do, such as mowing the lawn, taking out the bins or even cooking a meal. When we said “For better or worse”, she got the raw deal.’

The couple plan to create as many happy memories for their daughter as possible. Ian recently made a video for George about relationships, telling his daughter to have lots of friends and to let them become her extended family.

‘I told her to have different types of friends who will all help her in different ways and to never say anything she might regret to them, because once it has been said you can never take it back.’

This week the family are going to Disneyland Paris, where Ian plans to record more snippets on his video camera.

‘I’ll just be a voice on the screen saying: “I hope you remember when we came here, George, and had such a happy time together.” That’s all. Nothing too deep.’

At that moment, George stirs and, through sleepy eyes, wriggles onto her Daddy’s knee for a cuddle.

‘I just want her to have memories of me,’ he says. ‘To know who I was and to know she is very loved. Because she is. Every moment of every day — aren’t you, sweetheart.’

-Daily Mail UK