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My name is Ruby and I am 19 years old. I was born with a rare
neuromuscular condition called Arthrogryposis Multiplex Congenita,
which affects the muscles and joints in my arms and legs. I cannot
walk and use a powered wheelchair for mobility.
I try to maintain
as much independence as possible without having to rely on other
people to help me, because I don't want my disability to define who I
am or place limits on what I can do. Many people take for granted
simple things such as car pooling, using public conveniences or
staying at friends' places. With a wheelchair, it's hard to do these
things. I'm currently studying a Bachelor of Speech Pathology at
Flinders University, and am in my second year. In addition, I manage
my own business as a professional makeup artist, and hope to work in
Special Effects makeup for films one day.
I am seeking your help in assisting to fundraise for my own specially modified vehicle, which would allow me to drive a car whilst sitting in my wheelchair. The car itself is going to cost $50,000, and the modifications an additional $30,000 - that's $80,000 in total, and money that we don't have! There are no avenues I can take at this point to assist in the funding for this vehicle, so I need all the help I can get!
At the moment I get around with the help of Access Cabs, buses
or my parents. Unfortunately accessible public transport is often
limited and unreliable, as well as expensive. I have to arrange
transport in advance, which means spontaneous outings aren't really an
option, and somewhat restricts my social life.
Being able to
drive myself around would greatly increase my levels of independence,
social inclusion, and would give my parents a break! It would
hopefully provide a more "normalised" social lifestyle, like
other people my own age. As I move towards becoming a professional
Speech Pathologist, the ability to transport myself independently will
become more and more important for me. I want to be able to contribute
to the best of my ability to society, as both a Speech Pathologist and
Makeup Artist.
As well as raising money, I want to raise awareness about disability. There is more to someone than their physical disability, and often it is the external barriers that make things most difficult (eg. stairs!). Ultimately I want Ruby's Wheels to become a fundraising platform for other young people in my position.
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