Help me to get out and about

Hi my name is Brenton Smith, I am an Australian living with Duchenne’s Muscular Dystrophy (DMD). This is a degenerative condition which has been progressing since my childhood, slowly taking away my mobility as my muscles deteriorate.

My mum has raised me and my 3 sisters as a single parent which comes with many challenges but as I reached the age of 10 and my disability started to deteriorate this put a lot of stress on my family. When I was 10 I loved to play video games just like any other kid my age. For my birthday I received a PlayStation 1, this was a big surprise as we never had money. One day I came home from school and ran home as fast as I could to play Crash bandicoot on my PlayStation. My mum called out for me to get my shoes on to go to the shops, I tried to stand up but I wasn’t able to. From that point my life has changed. I have been in a wheelchair for 20 years navigating my life with a degenerative disability.

Schooling days was the worse growing up as I was bullied by kids who didn’t understand what it was like to have a disability and what it was like to need assistance with every task even to go to the toilet and to do schoolwork. The teachers were no different as I was treated like a little child and given no opportunity to further my education and do stuff other students could do like the HSC. I didn’t let this stop me and completed year 12 without my HSC.

2 years after I finished school. I got sick with the flu which turned in to pneumonia. This landed me in intensive care for 3 months fighting for my life as having my disability makes my lungs strength and capacity weak. Several times during my stay the doctors told my family the gut wrenching news that I might not make it. I was not going to let that happen as I love life to much. I did everything possible to get better such as undergoing 4 surgeries, intensive physiotherapy and a whole lot of doctors. I even spent my 19th birthday in hospital. After all of this intensive work to get me better I was discharged from hospital with a new outlook on life. I was going to not let my disability control me and i was going to prove to society that you can achieve anything in life if you don’t give up.

On 27th of May 2022 I did what no doctor and Family said I could do. I became the proudest dad to my Beautiful Daughter River. This has Changed my life completely and now I have a purpose to be here. She is my everything. I would do anything for her even though I need Physical support to help look after her from my support team. This is the main reason I am doing this Go Fund Me so I can spend every moment with my child and not be limited to what I can do. I want to be able to drop her off on her first day of school and pick her up on her last day of school.

My condition currently has left me with only the use of my thumb and index finger and limited mobility in my head and face. I am lucky enough to have a modified wheelchair which allows me to access the community and retain enough independence to enjoy life, but weather is a barrier as even a slight drop in temperature will affect my muscles, therefore leaving me unable to utilise the controls.

I live independently with the assistance of my support team.

Currently I rely on taxi in order to get around but this is very costly leaving me no choice but to opt out of family time or assisting with shopping as my support team don’t have cars that are accessible and not suited for my wheelchair, this also makes it hard to get to appointments as a result I get stuck at home and miss out on a lot of things which has an effect on my mental health as it would anyone else.

As my condition progresses, I am requiring access to a modified vehicle which can accomodate me and my wheelchair to get me to medical appointments and to get out and access the community and to take my 2 year old daughter out when I have her.

Getting this vehicle will allow me to simplify and expand what I am able to do currently. I can go on further drives within NSW and beyond to see extended family who I have not had access to in years, giving them an opportunity to meet my daughter and spend time with me.

I am making this page in hopes that we can afford a suitable KIA carnival model which is priced between $50,000 to $65,000 My NDIS package is able to financially assist with vehicle modifications, and equipment, but my family and I cannot purchase the vehicle as I can only receive the disability pension from Centrelink and NDIS refuse to pay for the vehicle they will only pay for the modification if the vehicle is newer than 5 years and less then 100,000 kms.

We would personally be happy to seek a cheaper, older model, however NDIS rules in regarding to vehicle modifications requires the vehicle to be within 5 years of manufacture and within a certain kilometres usage range

So far we have been relying on private taxis in order to have a modified vehicle suitable for me so that I may attend medical appointments. This is becoming increasingly more difficult as there are not many of the required vehicles within my area so I am often unable to reliably go out anywhere, or worse I am easily left stranded without a ride home for multiple hours.

Some privatised taxi companies are extremely limited with their fleets and wait times are multiple hours at a minimum.

To utilise these services this requires me to use NDIS funding, and at times, my own finances, which is difficult as a single income on a disability pension which at times leaves me in financial hardship. Aswell as medical necessity I would like to get out more for social trips to see family and make beautiful memories with my daughter.

I would like to thank anyone who has taken time to read and understand my situation and also those who have the financial means in which to assist me. We are aware that this is a large sum of money to ask of strangers which is why this is very hard for me to ask as I don’t want to feel like a charity case. I whole heartedly appreciate any donations.

If you want to know more please come down to Gregory Hills Hotel I will be there every Saturday night.

If you don’t have the means to donate, please share this around because if I can reach 60,000 people with a dollar I will reach my goal and my biggest dream can come true.