My name is Samantha Grigg and our family have lived through the heartbreak and resilience that comes with Motor Neurone Disease (MND). My husband, Christopher Grigg, was officially diagnosed with MND on the 1st of May, 2018, though we had suspected the disease nearly a year prior. From the moment we received the diagnosis, we committed ourselves wholly to raising awareness and funds in the fight against this cruel and unforgiving illness. I must admit I did take a little time to accept his diagnosis; I didn’t want to believe that my fit, strong 54 year old husband had been diagnosed with a terminal disease and especially one which we could not even try and really fight due it’s complexity and lack of understanding.
Working in healthcare administration gave me a unique and fortunate position to care for and support Chris throughout his journey. It was a role I embraced with love and determination, though the path was far from easy. We faced immense challenges—physically, emotionally, and systemically. Some of those experiences were incredibly difficult, including an incident during an X-ray in palliative care that contributed to Chris’s early passing on the 22nd of September 2022.
Despite the pain, our focus never wavered from advocating for better awareness, care, and understanding of MND. Chris, I and our family believed that by sharing our story, we could make a difference—that no family should have to walk this road unsupported or suffer the avoidable complications we endured.
Now, I would like to tell our story—not just to honour Chris, but to help others. I hope that in speaking out about our journey, I can be part of changing the experience for others and making this devastating disease even a little easier to bear for those who come after us.
