Father of youngest MND sufferer pens open letter

Robert Lintott’s daughter, Lucy Lintott (22), was diagnosed with the terminal illness, Motor Neurone Disease (MND), almost three years ago, when she was just 19 years old. Opening up publicly for the first time he wrote this letter to her:

Father of youngest MND sufferer pens open letter

Posted : 01/09/2016

Tuesday, November 19, 2013 is the day I will never forget. It changed our family’s life forever.

No father should have to write a letter like this to his daughter, but it is to show how special and unique you will always be to me.

You have taught all of us the meaning of true strength and courage and I treasure every precious moment we have left together.

Your mum and I knew something was wrong with you from as early as June that year but never imagined the enormity of what was coming our way.

You were working at the Baxters Visitor Centre and burned your hand with hot soup. We thought you were protecting the scald, but when we were having tea a few nights later we noticed you were only using one hand.

Then you went off to Camp America and during your time there we heard you had fallen and hurt yourself. When we picked you up from Glasgow Airport we noticed you walking oddly, and that your speech had changed.

It is the one thing no father wants to admit to himself – that his daughter is sick.

I’ll always remember your first appointment with the specialists. There were tests, scans and a lumbar puncture and by early afternoon we were told we could go home, but to come back the next morning for more tests.

Although we were worried, we were in good spirits, laughing, joking and watching The Big Bang Theory on your laptop between tests.

I was thinking that whatever it was would be cured with some pills or a routine operation. Soon you would return to your exciting new life at college in Glasgow.

We came back to the hospital and I remember how the doctors and nurses brought in chairs and sat us down. They began to tell us that they had done all of their tests and asked me if I thought I knew what the problem might be.

I said we had discussed the symptoms and thought it could be multiple sclerosis, a brain tumour or some kind of stroke.

The specialist paused for a second and then said, ‘It’s none of these, it’s motor neurone disease.’

I felt physically sick. My heart started to pound. You didn’t know what it was, but I knew all about it from reading Fernando Ricksen’s story just a couple of weeks earlier.

You were told that it’s incurable, there is no effective medicine to help control it and 90 per cent of people die within the first three years.

These facts still ring in my ears, accompanied by the vision of you crying. I have never felt so helpless.

I had just watched the doctor deliver a death sentence on my youngest daughter.

What I would have done to swap places with you. I started to think they had made a mistake but was told all other possible illnesses had been ruled out. It was MND.

We were asked to return to the hospital the following day, with all of our family, to meet a doctor who had a special interest in MND who would explain and answer any questions.

Then we were free to go. As we left the hospital, I just felt, ‘This can’t be right. My girl is only 19.’

I found it hard to look at you without my eyes filling with tears. There was nothing I could say or do to comfort you, to make this go away or make things better.

We now had to make the journey back to your flat and break the news to the rest of our family.

Still in a state of shock, we tried to compose ourselves. And strangely enough you felt hungry, so we set off down the street in search of a place to eat. We ended up in the Ubiquitous Chip. It was late afternoon and we were the only customers.

We ordered food and I stared at my cutlery with the events of the day replaying over and over in my head. The doctor’s words – “90 per cent of MND sufferers don’t make it past three years” – just kept repeating. How could this be possible?

My darling daughter may only have three years to live and will end up totally paralysed.

What happened next will stay with me for the rest of my life. You looked up at me with a smile on your face and said, “I wish I had multiple sclerosis now”, and laughed.

I was absolutely amazed at your courage, that you could make a joke of your situation. And although I really wanted to cry, I just had to laugh with you.

From then on, I promised myself to look for the positives, to help and support you. The last thing you needed to see was your dad filling up with tears every time he looked at you. I had to show the strength that you had shown me.

Your focus on making the most of the time you have left has been the inspiration for our family to stay positive. You have been busy working your way through a bucket list of 45 wishes, including flying helicopters, scuba diving and taking a seat at the opera.

MND devastates families and leaves sufferers no chance of survival, no matter how hard they fight.

That’s why it’s so important to understand the disease and find a cure. It doesn’t discriminate and never in a million years would I have thought one of my children would be taken by such a horrible condition.

You were always a very fit, active, outdoors kind of girl. You didn’t smoke or drink and had a very healthy lifestyle.

At such a young age, why should you suffer this? No one knows and we will never solve the puzzle of MND unless the awareness, funds and demand for the research continues, to help us understand it and find a cure.

I’m incredibly sad that you won’t achieve all of your goals and dreams. We are so proud of you, and how well you have coped with slowly losing your speech and mobility.

I thank my lucky stars to have such a beautiful, fearless and determined daughter who has taught me to keep on fighting when things are tough.


Robert’s Machu Picchu Challenge

Robert, along with 27 other MND Scotland supporters, will be departing for Peru in on 2nd September 2017 for an experience of a lifetime, by trekking to Machu Picchu.

“I had been looking to set myself a challenge to raise funds and awareness for MND Scotland and was planning to cycle from Lands’ End to John O’Groats. Then this came along and I thought, ‘no I’ve got to do this’. I’m quite fit and active, I work out and cycle, but I will take this seriously and do plenty of training. I’m really looking forward to this challenge for many reasons, one of them is meeting people who have had similar experiences to me in regard to having loved ones who have, or have been taken by MND. It’ll be an experience of a lifetime; this opportunity may never have come around if Lucy didn’t have MND, so I’m really looking at all the positives and am looking forward to raising funds for such a worthwhile cause. It’s going to be amazing.”


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“I’ve wanted to do Machu Picchu for a long time, for the challenge itself, but also for the Lost City. Machu Picchu will bring the satisfaction of completing an amazing challenge and seeing incredible views, plus the added bonus of being in the Lost City to marvel at the architecture and history of what has to be one of man’s greatest accomplishments of its time.”

Robert Lintott on his Machu Picchu Challenge

Robert Lintott on his Machu Picchu Challenge