Dr John Hamlin, 53, is a consultant gastroenterologist at Leeds Teaching Hospitals. His wife Susie, who worked as a senior dietitian on the liver transplant unit at the same hospital, died aged 45 from MND.

In October 2015 my wife, Susie, completed her first marathon. She was fit, healthy and incredibly happy. Susie was in a job she loved, and had just completed her MSc with distinction. Even more important to her - she was a mum to two gorgeous kids, my wife, a sister and a friend to many.

Six months later, Susie noticed that her speech was becoming slurred. It soon became apparent something was wrong. It took almost a year to confirm the diagnosis of bulbar motor neurone disease (MND). Then she deteriorated quickly.

Susie was incredibly brave. She was a very private person, and found the physical deterioration very hard. It’s absolutely heart-breaking to know you’re not going to see your kids grow up, to see all their milestones.

Susie died from MND on 3 April, 2018 at the age of 45. It’s completely changed all of our lives.

As Susie was always was such a positive person, I wanted to do something to reflect that for the kids for her 50th - to highlight how she’s still incredibly highly thought of amongst friends and family.

I decided to run 165 miles in eight days from Melrose rugby club in Scotland to Headingley rugby club in Leeds. It was also inspired by two legends of rugby, both sadly diagnosed with MND – Doddie Weir and Rob Burrow. Doddie began his rugby career at Melrose and Rob played for the Leeds Rhinos at Headingley.

Doing that run brought a lot of people together from different walks of Susie’s life – friends and family that hadn’t seen each other for a while, or hadn’t even met. We raised over £34k, and completed it on the eve of Susie’s 50th birthday. Both the kids joined me and ran the final stretch with their friends. I am so proud of both of them and

I really wanted them to see what their mum meant to everybody in terms of her positivity and how many lives she touched.

It needs to be highlighted just how cruel MND is. The disease slowly paralyses previously fit, healthy people and dramatically cuts short their lives.

People think it’s relatively rare, as there are only 5,000 people in this country at any one time with the disease. But the reason for this is that people die of it on a daily basis, there’s no treatment yet to adequately slow down or reverse the progression of the disease. That’s the brutality of it. It’s going to affect one in 300 people in our lifetime. So, it is a significant disease, with a significant impact, not just on the patient but on the family and friends around them.

The Rob Burrow Centre for MND would pull all the multi-disciplinary team into one place, and offer continuity for loved ones too. Families need support when the inevitable decline happen because it’s a horrific thing to see a loved one go through. The centre could also offer the facilities for high quality research, with well-looked after patients involved in clinical trials, as research is vitally important.

The message I want for my story is that Susie wasn’t defined by her diagnosis.

She was defined by her friends and family and the people who loved her. Her legacy is her gorgeous kids, and the happiness she brought to everyone else - she’s not defined by being that girl with MND.

She gave us permission to carry on and build a happy life, it’s an incredible gift, and really brave when you know you’re going to die.

Rob Burrow sent me a message of thanks on my challenge. It was so inspiring. Any pain I had melted away. Having been an elite athlete, to be in the public domain when your body is literally failing you - you can’t talk, you can’t walk, you can’t speak, you can’t eat - to let people see that decline, because it’s impactful in terms of raising awareness and funds for research, is incredibly brave.

He has a massively powerful message in terms of what needs to be done. My heartfelt thanks go to Rob for that, and to Kevin Sinfield. He’s just an inspiration with his challenges; as hard as nails. But that’s all we can do; there’s nothing else tangibly we can do to help, other than run and raise money.

Kevin would run through brick walls for his pal, as I would have for Susie. We need something more, something better for them.

Photo credit: Lorne Campbell, Guzelian Media 

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