Help Dad & Husband max time & independence with young family

I am gutted just writing this. I am on autopilot with it all. Numb you could say.

How Paul, Stacey and their girls are feeling, I cannot even imagine.

In June, my brother Paul was diagnosed with Glioblastoma IDH Wild Type Multiform – all this happened only 2 days after the passing of our aunt also from a similar Glioblastoma tumour.

All this comes as a shock.

The week before he had an emergency removal of 98% of the tumour. It has been established that the remaining 2% will take his life within the next 12 months. He is now calling himself “Mr 1Percent” and that is what we are working with. Only 1% of people survive this type of Brain Tumour.

This leaves little time to make urgent and very necessary changes to the house to give him independence as he is very quickly losing his core mobility controls and is now contained to a wheelchair, that he cannot currently move through the house in.

So, contractors have already been engaged to install storage in as many places as possible throughout the house, as it is an older 1970’s house, so that we can clear the hallways so we can allow Paul to move about the house independently for simple things like using the toilet or bathroom.

Although we initially planned for this GoFundMe to include a studio area for Paul to do his music treatment from, which has proven to be incredibly successful for the establishment of neural pathways to improve his fine motor skills in his hands, it has now become apparent that these kinds of projects will not be able to take place, with the lack of time we have.

So, instead, we have reworked this campaign to utilise hire equipment, where we were talking about major asset purchases previously, such as wheelchairs, as the plain and simple truth is that purchasing such an item such as this for such a short amount of time is simply unrealistic.

So, what we are now looking for is assistance to hire some of these units whilst we wait for the government agencies responsible for taking over payment for these items, taking over at the earliest possible junction.

Paul’s treatment is currently, on a much needed 4-week hiatus. However, during this period, it is expected he will reach his peak illness as the radiation continues to build and we start to wean him off other drugs that we utilised to manage both the Chemo and Radiation treatments.

To top things off in a series of incidences that are being pursued with the appropriate authorities, Paul was involved in 2 traffic incidences. One that caused impact to the front left-hand side of his head and one that incurred concussion and a broken back outside the very medical centre where he was being treated each day for his radiation therapy.

These matters further complicated Paul’s situation and his broken back ended up being broken a further two time, whilst in hospital, where poor decision making by those in control had made. These matters will also be pursued.

But the reality is that he will be mostly bedridden for what should have been potentially his last trip to his hometown of Sale. Where he had planned to take a bucket list boat ride with his mates. Now this can no longer happen.

Paul is the dedicated owner of several finance brokerage companies and has dedicated his working life to developing niche finance and insurance options for alternative dwellings in Australia. To the point where he was the treasurer of the Australian Tiny House Association, www.atha.org.au, and he took over the voluntary role of MC at 16 continuous Tiny Homes expo’s around the country to ensure the education and growth of the industry, amongst many other volunteer roles within the industry.

The most important of which, is run at an international level to create the very first Tiny Homes standards, which then can be communicated to local, state, and federal government areas across not only Australia, but other countries as well so that they can benefit from housing options such as these.

His Little Big Sister (myself), his Wife, his Kids and other family members have been pleading with him to relieve these duties as soon as possible, but of course he continues to assist in these areas, even with little spare time, it is his passion to create affordable housing for all.

He has now come to the realisation that with such limited time left he needs to work with his children to create precious memories instead.