About – Fundraising for Shane’s MND Battle

Fundraising for Shane’s MND Battle

Help Shane Stay Home with Dignity

Dear Community,

We are reaching out for support for our beloved Shane Lewis, who has recently been diagnosed with the fast-progressing bulbar variant of Motor Neurone Disease (MND). This devastating disease has rapidly impacted Shane’s ability to breathe, speak, and eat, and is now affecting his ability to move. Motor Neurone Disease is classified as a terminal illness, and most people with this illness reach mortality within 18 months. Given Shane’s rapid progression, it is likely to be much shorter for him, and we simply do not have time to wait for funding to become available. We urgently need to make critical modifications to my parents’ home to ensure he can spend his remaining time comfortably and with dignity in the area that he has lived and supported his entire life.

For those who don’t know Shane, he is a long-time local, born in Eildon and raised in Alexandra. He attended local schools and has been an integral part of our community. For many years, he owned and ran Murrindindi Transport and more recently worked as a Cleanaway truck driver for 17 years. Shane’s diagnosis has been a heavy blow to our family, both emotionally and financially. We are reaching out for your help to address three urgent needs:

Note Update 26/07/2024 the core thing we are looking for is those that had a trade that can help, people that can potentially donate materials that can be used for the change or people who can donate financially so we can buy the materials. Please reach out via the contact us page if you are a trade or able to provide any materials you think can help.

  1. Bathroom Modifications: My parents’ current bathroom is not suitable for Shane’s needs, as the shower is over the bath. We need to create a wet room to provide him with the accessibility and safety he requires. This will also likely involve widening a couple of doorways. The estimated cost for these modifications is $30,000 to $35,000. This is our top priority, as it will allow Shane to remain at home for as long as possible.  We are hoping to obtain donated services, materials of funds to help pay for these items.  (for example we have already had an offer to donate electrical work)
  2. Update 26/07 Probably resolved – Electric Wheelchair: While there is some funding available through aged care packages, the system’s delays mean that Shane may not benefit from it in time. If we can secure funding for the bathroom, we can use the aged care package for the wheelchair.
  3. Update 26/07 Probably resolved – Electric Bed: We currently have a second-hand electric bed that will suffice for now, but a new one will be needed in the future and MND Vic does not currently have one availiable in their loan library.

Our aim is to raise funds to cover these costs or to receive donations of services and materials. We are open to businesses using photos of the work to promote their services. Your contribution, no matter how small, can make a significant difference in Shane’s quality of life. 

Despite the availability of some funding, the gaps in our system mean that it won’t be available in the timeframe required. There is every chance Shane will not be here by the time it comes through. Getting this bathroom sorted urgently is critical to enable Shane to spend his remaining time at home in the community where we has spent his entire life.

Why This Matters

MND is a cruel and relentless disease that weakens muscles until they can no longer be used. It strips individuals of their ability to move, speak, eat, and eventually breathe. It cannot be stopped or reversed and is classified as a short-term terminal illness. There are no treatments available for Shane, and there is no cure. The vast majority of people with require full-time carers and around-the-clock assistance to perform basic functions that most of us take for granted.

Shane’s diagnosis has been devastating to our family, and we are doing everything we can to support him. Your help will make a direct and immediate impact on Shane’s life.

Shane is more than his diagnosis. He is a husband, a father, a grandfather, and a cherished member of our community. His wife, Marlene, who has lived in the area for 35 years, is probably most well known for her Black Forest Cakes in the 90s, and more recently for her quilts and homemade socks (Redgate Socks and Redgate Quilting). Together, they have always been active in the community, including promoting fundraising efforts for MND Victoria.

How You Can Help

  • Donations: Financial contributions to help cover the cost of the bathroom modifications, wheelchair, and bed.
  • Services and Materials: Donations of services or materials for the bathroom renovation.
    • Note that they are based in Alexandra, Victoria
  • Spreading the Word: Sharing our story with your network to help us reach more people.

Any funds raised beyond our needs will be donated to MND Victoria to support others affected by this disease who may not have the same community support that we do.

Donate and Share

We will be setting up a GoFundMe page and posting updates on Facebook and local community groups.

We know this is a lot to ask, especially given our previous fundraising efforts for MND Victoria. However, we now find ourselves in need of your direct help. Your support, in any form, will mean the world to us and make a profound difference in Shane’s life.

Thank you from the bottom of our hearts.