Today Alexandra Newspapers shared Shane Lewis’s story, and while it’s incredibly hard to see your family’s journey laid out on a newspaper page, I’m also grateful for the opportunity to help shine a light on what living with MND really looks like behind closed doors.
This article talks about Shane’s decision to access VAD (Voluntary Assisted Dying), but more than that, it highlights the reality our family has faced over the past two years navigating MND, aged care, regional healthcare, support services and a system that too often leaves families exhausted and fighting for help during the hardest time of their lives.
One of the biggest things we wanted people to understand is that this was never about a lack of funding alone. So often the issue was simply not having trained staff or services available locally to provide the care Shane needed. We found ourselves constantly coordinating carers, services, appointments and support while also trying to simply be family.
Mum has carried so much through all of this. Anyone who knows Marlene Answer-Lewis knows she would do absolutely anything for the people she loves, but the emotional and physical toll of caring for someone with a disease like MND is enormous.
We’ve also been overwhelmed by the kindness and support of our local community. From helping us complete the bathroom renovation, to fundraising, messages, meals, transport and simply checking in, people have shown up for us in ways we will never forget. If you are one of those people, please know even if we have never said, it we appreciate you so much.
If sharing Shane’s story helps even one other family feel less alone, or helps create conversations around improving support services for regional families facing terminal illness, then that matters.
MND is cruel. It takes away so much while the mind often stays completely intact. We still desperately hope for better support, better systems and ultimately one day a cure.
Thank you to everyone who has supported Shane, Mum and our family through this journey. 
(Zoom into the image to read as it will work on a phone or you can go online to Alexandra Newspapers and subscribe for a week for $1.50)
