Hi everyone!

My name is Shanais Nielsen and I am 28 years old. I was born with a disability called Spinal Muscular Atrophy, or SMA for short. Spinal Muscular Atrophy is a slow-progressing muscle wastage condition and is often referred to as the ‘young person’s MND’. It's a genetic condition that affects the motor neurons (the nerves) that control my muscle movement. This means I am extremely weak as my muscles don't function like an able-bodied person. I live in an accessible apartment in Melbourne and I use an electric wheelchair to get around. I absolutely love the life that I live and try not to let my disability hold me back as much as I can.

I moved to Melbourne, a 12 hour drive away from family and friends in NSW a few years ago for an amazing job opportunity. One of my biggest goals has been to be able to travel frequently to see my loved ones back home. I'd love to go visit them more but the problem is I now have no mode of transport. During Covid it was much easier to hire a specialised vehicle, but that has since changed and I can no longer hire a vehicle for an extended period of time due to funding restrictions.

I work part-time in the disability sector and do my best to contribute as much as I possibly can. It is my passion to help others with disabilities, so I am extremely grateful for the work that I do. Because I work part-time, my disability pension is just $33 per week, even though I earn little being employed only part-time. When you have a disability, everyday expenses and the general cost of living can be much more expensive. I regularly spend much more than my pension and allocated NDIS transport allowance catching taxis. An Uber is out of the question.

We are very lucky here in Australia to have access to the NDIS, but unfortunately, accessible vehicles are not funded. I need my own form of transport, and unfortunately an accessable vehicle is way out of my budget. I can't just go and buy anything that takes my fancy. Australia, and even more specifically, Victoria, is very strict when it comes to safety in these types of vehicle so the prices of accessible vehicles here is very high.

A Kia Carnival for example is around $65,000 new for a basic model. The wheelchair modifications are roughly an additional $45,000 and the entire process can take from 12 to 18 months to complete and have the modifications approved. The NDIS will pay for the wheelchair modifications, but not the car. That puts me around $65,000 out of pocket, money I just don't have and after lots of trying, I just can’t save this amount while still trying to live a normal life. I work as hard as I can for as many days as my body will let me, and because of this I lose access to funding and government support. A personal loan sits at near 15% interest at the moment, so that is out of the question. I have been saving for a couple of years now but have barely make a dent in this goal amount.

My other option is a second hand van with modifications already complete. A 2014 Toyota van with all of the modifications and VIC safety standards met is approximately $62,000 on road. This would be my own car and this is my goal. The independence, freedom and flexibility this would add to my life would be incredible. I would be able to drive and collect groceries, attend regular health appoinments and get around Melbourne without having to organise and pay for a taxi service or being left outside in the rain or extreme heat. A van would give me the freedom to be driven to work and to go out with my boyfriend, friends, family or support workers on my terms, without stress or financial concern. I'd also be able to visit my family in NSW more than once a year, achieving my biggest goal.

I'm a very proud person, and I don't like to be treated differently because of my disability. I would never want to come across as entitled or that I think I deserve a car more than any other person with a disability, but I don't want to let SMA stop me from living a fulfilling life. Creating a Go Fund Me has been met with only words of encouragement from friends and family who I've discussed this topic with. If you don't ask, you don't receive. So, I'm putting this out there in an effort to raise some of the funds I need to buy a vehicle.

Not everyone can afford to donate, I completely understand that, so a share would be appreciated just as much!

Thank you for taking the time to read this far!

Lots of love and gratitude,

Shanais