Katie Dowson, 39, from Ilkley, is a digital director for the NHS, she has raised over £10k for charity in her dad’s name. In 2018, Katie’s dad Warren died of MND.

My dad was Leeds born and bred. He met my mum Lorraine when she was 14, and he was 16. They were married for 48 years, together for 51. When dad died; she lost her best friend, and I lost my hero.

My dad was a big family man. His family was the most important thing to him. My two older brothers Chris and Ben have lived abroad for the majority of their adult lives but we are a close family and we were united in supporting dad with his diagnosis.

Dad loved Yorkshire and was a proud Yorkshire man. He was a huge Leeds Rhinos fan and also had a season ticket for Yorkshire cricket.

When he died, we scattered his ashes everywhere – we have so many special places where we wanted to remember him.

We even threw him over Niagara Falls, but a bit closer to home, we have some of his ashes in the memorial garden at Headingley stadium – a fitting resting place for a man who spent so much of his life there. He used to say, "I used to walk up to Headingley by myself when I was four!"

Dad was a real outdoorsy person. When he was younger, he was very sporty, and he played rugby. He was always outside, always making something, a real DIY dad – we used to laugh as he had his shed more alarmed than his house; it was his pride and joy and he had more tools than B&Q.

That was one of the reasons his MND diagnosis was so cruel, because his physical deterioration stopped him from doing things he really loved.

He first started to notice something was wrong when he struggled to grip a glass or open the door with a key, having initially lost power and control in his left hand. After 18 months of investigations, his shock MND diagnosis finally came in August 2016. This had never been on my dad’s radar. My mum was sat outside in the waiting room, completely oblivious until my dad came out shell-shocked.

At the time, he looked so well it was hard for anyone to accept. My brothers flew home and we had a long weekend in London, just spending time together processing the news as a family. We decided to get a second opinion from Professor Shaw in Sheffield, one of the best MND consultants in the North. Unfortunately, she confirmed his MND diagnosis, but through meeting her, dad had someone he could really trust, and the combination of her wonderful people skills, care, and incredible knowledge of the disease really helped dad and our family.

Travelling to Sheffield on top of everything else meant dad spent a lot of time in a car going to a lot of appointments. This got harder as he deteriorated, and the trips exhausted him. There are so many different services involved in the care of MND – neurology, dietician, nutrition – scattered all over the place.

The amazing thing about the Rob Burrow Centre for MND is that’s going to make such a difference to patients, their family and friends’ experience.

When time is so short, you don’t want to spend it traipsing around and sitting in miserable waiting rooms when you could be making precious memories with family and friends.

As a family, we would have preferred to have a dedicated specialist centre on our doorstep.

Everybody’s story is different; the nature and speed of the deterioration is clearly different in individuals. My dad’s motto was to just get on with it. He did this so well, but he was dealt with one sledgehammer blow after another. There were days when we felt so helpless, we just had to look away and cry. We never wanted to cry in front of him when he was being so strong.

Dad would always say, I’m alright even when he wasn’t. His dignity and independence were so important, and as a family we wanted to support him in having as much of this as he could. It was on his terms on who he told about his diagnosis, and how he told them, and we followed that as a family. We encouraged him to have a bucket list, which included an amazing month-long trip to America with mum the year before he died.

My dad was always my biggest supporter. If I needed him, he would break land speed records to be there for me! So, after his diagnosis I wanted to show him that I would do the same for him.

He’d do anything for me, and I’d do anything for him.

Not long after his diagnosis, I planned my first fundraising activity. In total, I have done nine different fundraising challenges for my dad, ranging from a half marathon, to full, to ultra, climbing his favourite peak (Ingleborough) and designing a 10-day Northern Pilgrimage walking challenge in his memory. Dad didn’t live to see all of my challenges, but I know he would be proud. He was so overwhelmed by the amount of money people donated in his name. He was bowled over by the care and love from people – strangers who were caught up by his story.

At the beginning of 2017, I signed up to do the Leeds Half Marathon for my dad. I was fit but a total non-runner. The training was so good for me mentally and a good escapism from the reality of dad’s diagnosis. Not long before race day, I had a pain in my leg that wouldn’t go away. I actually ended up in hospital with a blood clot. I went on blood thinners and was told I had to rest for a minimum of 6 weeks. I was so upset and pleaded my case, I said "I can’t rest, I’ve got a half marathon in four weeks! I have to do it, for my dad." My GP read me the riot act, told me all about the risks and said "do you want your son to have no mum?!"

I had no choice but to defer (I later ran the Leeds Half Marathon three days after my dad’s funeral). Not wanting to let my dad down, I signed up for the nearest and earliest half marathon I could do after the enforced six-week rest period.

I completed the Birmingham Half Marathon with my proud dad at the finish line, both of us in tears.

A month later, I signed up for the Yorkshire Marathon in October that year. I never thought I’d ever do a marathon, but I wanted to challenge myself and go that extra mile for dad. By the time the marathon date came, dad was really struggling, walking a few steps completely exhausted him. In hindsight his lungs were failing and he’d really started to deteriorate.

I’d agreed with my mum that we’d not make a big fuss about the day, and that it was such an early start dad should support me from his armchair at home. Mum took me to York and popped up along the route cheering me on my very first marathon. At the end, after a few missed calls we realised dad had somehow against all the odds made his own way to York. The effort it would have taken for him to get there was unbelievable. He was there because it was so important for him to support me and hug me at the end. That’s the essence of the wonderful man I’ve lost.

Only weeks before dad’s death I’d visited my older brother in America and told him that I thought he and Ben should come home sooner, rather than later, to spend quality time with dad. I didn’t realise at the time just how ill or close to death he was. Thankfully my chat prompted Chris to book a flight home the following week, and I’d said enough for him to suggest Ben do the same. Just days after Chris landed, dad was rushed into hospital with breathing failure. We thought we’d lose him that night; he suddenly looked so much weaker and gravely ill. His oxygen levels had crashed, but amazingly he came through that night and was in hospital for two weeks, meaning Ben got the chance to be with him one last time and to say goodbye. Dad died two weeks after being admitted into St James Hospital. It brings us comfort that he knew we were all physically there with him, and that we all got to say goodbye.

Dad’s death felt really sudden in the end.

He died just 20 months after his diagnosis, despite us being told at the beginning that his MND looked slow progressing. It was a massive shock to lose him so soon, we thought he would be here well past his seventieth birthday, but sadly this was not to be.

My son George was 16 when dad died. The timing of dad’s death made him think hard about his own life, and he decided to do an apprenticeship in electrical engineering, which has been a fantastic choice for him. I can see all the things my dad taught him.  I have pictures of them both up ladders and with tools– my dad’s wonderful qualities have passed on through my son, and that’s such a beautiful gift. For my mum too. Dad would be so proud of George.

A year after dad’s death, I ran the London Marathon. I had on my back, "In loving memory of my dad". I’ve learnt that when you throw yourself into fundraising, or share your story, people share theirs too.

I had people patting me on my back, saying your dad would be so proud, so by the end of it I was a blubbering mess.

I said I’d never do another marathon, but I’ve changed my mind and am planning to run the inaugural Rob Burrow Leeds Marathon next year.

It’s in Leeds, my dad’s hometown, starting and finishing at Headingley stadium where we have so many precious memories of dad. He thought Rob Burrow was incredible – and it will be five years next year since Dad died, so how can I not run it as a really beautiful and perfect tribute for my dad?

Photo credit: Lorne Campbell, Guzelian Media 

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