How has MND affected you with Emily Conn

Motor Neurone Disease is an extremely brutal disease that has affected my family in more ways than one.

My first experience with Motor Neurone Disease was learning about my nan when I was old enough to understand. Sadly, my nan lost her life to the beast back in 1987. As I was born in 1999, I never got the chance to meet her. Thankfully, my family speak about her a lot and I am able to look through the many photo albums, I have no doubt she was an amazing lady. My pop would often speak about her and the many memories they shared together, pre and post having my dad and aunty. My dad often comments on my natural knack for cooking coming from her and I love at family gatherings, when we share recipes of hers. MND took nans life after 18 short months. When I ask dad questions, he doesn’t always like to share details of that time in his life. But he has told me little things like, when she could no longer speak, they would use a doodling board so she could write to them. And when she lost her ability to do both of these things, he would visit her and just hold her hand because she wasn’t able to communicate any way else, besides the occasional eyebrow twitch. Out of the 4 grandchildren, only my oldest cousin was fortunate enough to meet her when she was very young. If I had one wish, it would be to have met Lola and to have shared the memories with her that I did with my pop and the rest of my family.


Emilys Dad, Gary and Nan, Lola

Now, as a young adult, I have seen first-hand the effects of MND as a very close family friend battled the disease. A family friend that has been around since I was born and always treated me like her youngest daughter. She has followed all my sporting commitments and encouraged me to do the best I can. Unfortunately, Maree lost her battle late in 2021 after her huge fight. Maree was diagnosed early 2019. She was experiencing pain in her knee, which was affecting her ability to walk long distances. That was her first symptom. After being diagnosed, she soon became unstable on her feet and unable to walk unassisted. As time progressed, so did this disease. Maree was wiped completely of her muscle movement as well as losing her ability to speak, but never her sense of humour. It was great that with new technology, when I visited her, I was still able to communicate with her via an iPad. She would still come and support all my sporting commitments, even though it meant she sat in a wheelchair rather than the grandstand. She never wanted to miss a chance to tell me when I did something wrong during my games. I am so glad that she was still able to do the things she loved most, but things were no longer “easy”. Maree was a woman that had a passion for life like no other. She was an extremely giving and loveable person, who showed sheer determination in fighting this horrible disease. But for someone who was so strong, I could see the toll it was taking on her. She was a fully functioning woman living in a body that was failing her. She wanted to be able to do the daily tasks we take for granted, but her body did not allow her. Life post diagnosis looked very different for Maree, and unfortunately the outcome was inevitable. 

 
Emily, Gary, Maree, Mitch & Sue


Maree & Emily

When I use to speak to people about how my nan had passed away from motor neurone disease, so many would ask me what it was. It was sometimes the hardest part, that a disease, that causes so much suffering, was virtually unheard of. Now, moving forward a few years, when I now talk about losing my nan to this disease, or about Maree who has recently lost her fight, everyone seems to know it. FightMND is an incredible organisation that are working timelessly to promote, spread awareness and raise much needed funds to find a cure for this incurable disease. The work of Neale and the FightMND army is huge, and with the help of small businesses like this one who are working just as hard on the sidelines to do their part, I am hopeful that one day, there will be a cure. But for now, I will always do my part in sharing my story and supporting those making a difference. It will always be a cause that I hold close to my heart. 

To the girls, well done to you all. Your mum would be so proud of you! Susie and I definitely are.

 


19 comments


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