THE BASICS:

Hi! My name is Ollie, i'm almost 23 years old and I was born with a rare genetic disease called Fabry Disease.

Fabry Disease is a lysosomal storage disorder where, in basic, my body does not know how to break down a certain protein (Alpha Galactosidase A), and as a result it builds up in every tissue in my body, leading to a gradual decline in all bodily functions as the build up gets larger.

Some problems i've had as a result of this build up are:

And of course as many of you might know as of recent:

This disease is genetic and as a result my daughter Morgan will face these challenges herself as she gets older.

SO WHY DO YOU NEED A WHEELCHAIR?

In March of 2025, I went in for a routine MRI, not expecting anything out of the ordinary. But my results were anything but. 2 days after my wedding on April the 7th I received my test results:

To clear up the medical jargon: They found a pea sized... something in my brain. At this moment in time doctors aren't quite sure what it is, but it seems to be a toss up between Fabry nastiness, Multiple Sclerosis and everybody's favourite: the humble brain tumour.

And since then my life has been a whirlwind of appointments, tests and trying to figure out what the hell is going on inside my head. In fact, I have a lumbar puncture scheduled after this weekend and another two days in a row of appointments right before my birthday!

And since then my health has been declining.

The fatigue is unrelenting, of course. But on top of my regular Fabry symptoms we've noticed something unusual: My body movements are starting to become janky and not align with what my brain is telling it to do, and trying to rest becomes a series of facial and limb jerking not dissimilar to seizures. Every day I wake up not knowing what to expect and what my capabilities are. I am not the same person I used to be and I snap at people easily. What used to be a simple trip outside the house has become a marathon.

Currently I am using a walker for outdoor travel but it just isn't enough to help stop the fatigue and the symptom flare ups that occur afterwards.

AND THAT'S WHERE YOU COME IN:

I'm looking to fund an active model wheelchair in order to assist me in my outdoor travels

As everything is so recent and doctors are unable to give me a concrete diagnosis, I am currently unable to apply for disability and NDIS funding to help support me in living my day to day life.

Which means I cannot receive funding for a wheelchair.

The average active styled wheelchair in Australia is priced at about $3000-$5000 for basic models, with any adjustments out of the ordinary easily breaking the $8000-$12,000 bank.

The chair I am looking to fund is from an independently owned American company called, ironically, "Not a Wheelchair". It is a Husband and Wife business who make wheelchairs for people who cannot afford the typical expensive models. This chair would be basic and at the cost of roughly $1500 AUD, with shipping at $250 AUD. The remaining $250 dollars of this fundraiser would go toward me modding the wheelchair in order for it to have anti-tip wheels on the back, as well as handlebars so Maxxie (my wife) can push me if needed.

"Ollie why does it need to be an active wheelchair?"

The average wheelchair off the shelf is simply not a sustainable wheelchair, with most being made for short-term usage (broken bones, minor injuries, etc.). Usage for any longer than 6 months is known to have long term consequences, including damage to shoulders and worsening of overall symptoms. As my illness is chronic and degenerative (I will get worse over time), I suspect that my need for a wheelchair will go beyond the 6 month limit on a standard wheelchair.

An active wheelchair is styled specifically to be ergonomic and easy on the shoulders, with the wheels larger, more forward, and the frame generally being much more lightweight and easier to maneuver.

Think of a wheelchair as if it was a prosthesis: You wouldn't just get any old one off the shelf, you need something that is specifically designed for your body.

WHAT HAPPENS IF THIS IS SUCCESSFUL:

WHAT DO WE WANT?

Wheelchair made just for me at an affordable price!

WHEN DO WE WANT IT?

Preferably I will have hopefully raised enough funds to purchase the chair by the end of August, 2025. The chair will take about 2 months to build, and a further month after that to ship from America to Melton.