Before 2020 I had rarely heard of Motor Neurone Disease, let alone know what it was or what it meant. But that all changed when my 78 year old Nanny received the gut wrenching diagnosis in 2020.

Like most people feel about their grandparents, my Nanny was the best of all time. I adored her, I wanted to be like her, I and her other 5 grandchildren couldn’t ask for a better Nan and we simply couldn’t love her more - along with my Grandad - they were the ultimate matriarch of our family. 

My Nan, was a very healthy woman, she looked after herself, was in good shape, was very active and doing cartwheels into her 60s! My Nan fought cancer, had a hip replacement and also suffered with arthritis but that didn’t stop her - she was a force of nature.

That was until, perhaps about a year before her diagnosis, her voice started to waiver and gradually got worse over time, she started struggling to swallow, speak and eat. I think initially as a family we thought she may have cancer, throat cancer or something along those lines. It was a long road of tests, appointments and scans - a lot of waiting and not knowing what was happening to her and finally she received the diagnosis of MND in August 2020. 

It seemed like all of our lives came crashing down when we found out - because this wasn’t a diagnosis that has a cure, it was a death sentence - I knew my Nan was going to die. And it just seemed like she went downhill so quickly after that. Her muscles in her throat had essentially given up and she couldn’t use them anymore. She couldn’t speak and she had to write everything down or use an iPad to communicate. She couldn’t eat, and lost so much weight and became so frail it was a challenge for her to do anything because she had no energy, she would fall asleep a lot and get tried very quickly. Her clothes started to hang off of her. That was the hardest part for me, watching her get so skinny and wasting away - the only way to describe is just watching someone you love slowly die in front of you. And what was worse is that there is nothing you can do you had to watch with no glimmer of hope of recovery - it was final. This horrible disease stripped my Nan of everything she was, an energetic, loving, creative, brilliant person.

2 months after diagnosis, my Nanny lost her life and we said goodbye, she left behind her husband, my Grandad of 55 years. Who sadly passed away just over a year later suffering a cardiac arrest - he died of a broken heart.

MND is a cruel disease, it strips you of who you are, your independence, and leaves your trapped within your body. There is no cure for MND and once diagnosed you have a life expectancy of between 1 - 5 years. I take very small comfort in that my Nan was 78 when she passed away - I had 27 glorious years with her. But most are much younger with small or younger children and younger families when diagnosed. It turns your entire world upside down and you are never the same because of it. This is why I’m raising as much money as I can for MND, to help find a cure.