We have posted a bit recently about the people who have disappeared since Shane’s diagnosis. Unfortunately, there have been many. And if I am honest, it is hard for that not to become a focus sometimes. When silence is loud, you feel it. But today I want to shift that focus. Because while many...
Fuck this disease. Fuck You MND. Some days it takes more than it already has. Some days, anger is easier than anything else. Mum and Shane went home after staying with us for just over a week, and within hours it was one of those days that reminds you how relentless MND can be. A lot of physical...
I want to share something that has been sitting heavily with me. Supporting someone with MND is brutal. There is no soft way to say it. Since Shane’s diagnosis, we have watched this disease take things piece by piece. First his voice.He lost his ability to speak and now communicates using a...
Finn’s Fundraising Featured Again in the Pakenham Gazette! Finn’s incredible journey in raising funds and awareness for MND has once again been highlighted in the Pakenham Gazette (12th February 2025 edition)! This week’s article shines a light on his dedication, the overwhelming community...
Team Glampa at the Great MND Relay – Our Personal Experience On the 8th of February, we gathered at Albert Park Lakeside Stadium as part of Team Glampa, ready to take on the Great MND Relay and show our unwavering support for Finn and Glampa, Shane Lewis. The team consisted of Finn (of course)...
Recently our little hero Finn was interviewed about his fundraising efforts for MND Vic by a reporter from the Pakenham Gazette. This weeks paper came out and there is a FULL page about his efforts complete with photos of him with MP Emma Vulin as well as Glampa Shane. A quote from Finn from the...
We’ve officially kicked off the bathroom project! With the builder starting next week, things are finally moving forward. We’ve got a plan (pictured roughly in an aerial view), which includes adding cavity sliders and widening some doorways to make the space more accessible for Shane. The...
Navigating the complexities of motor neurone disease (MND) is a daunting journey, but accessing the right support services can make all the difference. Unfortunately, for families in regional Victoria like ours, finding an Occupational Therapist has been one of the biggest hurdles we’ve faced...