Kerry Everett, 50, takes part in charity runs in memory of her brother, Scott, who died from MND when he was 48.

In March 2017 aged 45, my only sibling, my older brother Scott was diagnosed with Progressive Bulbar Palsy (PBP). His symptoms started about a year earlier, first he tripped over his words, then the slurring started. He initially put it down to tiredness as he was a lorry driver and was always working long hours. His two young daughters at the time were aged five and two, so life was always busy.

He was initially diagnosed with a nasal infection. Months later, he was sent for further tests which resulted in his confirmed diagnosis of MND (PBP).

After the initial shock, our friends, family and community became a massive support. We fundraised enough to get Scott to Moscow where he had stem cell therapy. We knew it wasn't a cure, it was to simply buy him some more time and we did see improvement for a few months afterwards.

Scott started to decline massively in spring 2019. For someone who was a perfectionist and liked to be in control, it was heart breaking to watch him have to be dependent on others for the simplest of tasks and, worst of all, not be able to pick up his little girls and give them a cuddle.

On July 18, 2019 at the age of 48, Scott went into cardiac arrest. The paramedics were amazing and managed to revive him. When we got to the hospital, we were told that he was too weak and would not make it through the night. As a sister, I felt helpless for him and had to watch my parents lose their son. A quick decision was made to bring his daughters, Anna now 7 years old and Evie, now 4, to the hospital to say goodbye to their daddy. It was like watching a film and felt so unreal; how could this be happening to my family? I have to admit, I fell apart in the corridor as people just walked past me completely oblivious.

Scott and his wife spent some time together and through him squeezing her hand as she went through the letters of the alphabet, he made plans for his funeral.

When I was able to see Scott and say goodbye, I made a promise to him that I would always be there for his girls and that I would do everything I could to continue his fight and help to raise funds and awareness to find a cure for this most cruel disease.

At 3.55am on 19 July 2019, Scott passed away gently and peacefully. His wife was holding his hand, my mum and I were massaging his feet, and my dad was holding his other hand. I consider it a privilege to have been there with him at the end and to then speak at his funeral.

In addition to holding quizzes, I've ran the Great South Run for the last 4 years. I've tried many times to get into the London Marathon but have never been successful. When I saw Kevin Sinfield and Rob Burrow’s announcement of the Leeds Marathon, I entered straight away and will feel so proud to be part of something so special. Scott will be there with me in spirit and it's him and all the other MND warriors that will keep me going. As we say in our Run MND Facebook group, there's #Nofinishlinetillacure and I'll keep going until then.

Photo credit: Lorne Campbell, Guzelian Media 

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