SMA Australia


Phone: (03) 9796 5744

exp chantel moodyI’m Chantel and I am 21 years old with SMA Type 2.
I was diagnosed when I was 18 months old. From memory, I started using a manual wheelchair when I was attending pre-school and had one until I was about 6 years old when I then changed to an electric wheelchair due to my strength deteriorating. At the first primary school I attended, I was bullied and taunted for having to use a wheelchair. However, my experience with school got better after this with schools supporting my needs including classroom modifications like a higher desk, implementing a physiotherapy session during school hours and having teacher aides assist with toileting needs. By the end of high school I was having to request extensions and extra time for exams due to fatiguing faster than others. This didn’t stop me from being thoroughly involved in school as I was a part of the school’s choir, 40hr Famine group each year, fundraising for our Creative Arts Expo and was Academic Vice Captain in my last year.

Throughout my schooling years I had two major surgeries, one was on my feet to correct the angle of them which happened when I was in first grade, the other one was when I was in grade 5 to put spinal rodding in my back as I had scoliosis. These were huge impacts in my life and took quite a lot of adapting afterwards, however, ultimately knew it was going to help me in the long run.
After graduating high school in 2014, I started studying a Bachelor of Law and gained part-time employment at a local law firm as a receptionist which I still work at. In 2016, I decided to change from a Bachelor of Law to a Bachelor of Education which I began in 2017. I am also on the Queensland Family and Child Commission’s Youth Advisory Council and a taskforce member of the Queensland Premier’s Anti-Cyberbullying Taskforce.

This is all between also doing physiotherapy, hydrotherapy, ensuring I have supports in place such as support workers, the equipment I need and trying to adapt to the changes that come with a disability like SMA. In recent years, I have had to be put on a Bi-PAP machine for when I sleep at night due to my respiratory function deteriorating. I have also noticed recently I am losing the strength to feed myself every day, some days I can, some days I can’t, but up until this point I have always been able to feed myself. I am also fatiguing much faster these days.
My goals are to become a secondary school teacher to teach in English and History, to live as independently as possible, have a family of my own and to still be involved in whatever extra activities I want to. Treatment would mean I will be able to do the things I need to.

I live a fulfilling life with family, friends, a boyfriend, work, study and extra contributions to making my community a better place, and I want to continue to live this life to the best that I can, and with treatment, I will be able to better do this. Just because we are adults, doesn’t mean we don’t deserve to continue to live the lives we have decided to build for ourselves or better lives, and to know that a treatment could help stop the deterioration of SMA means that we have a more hopeful future ahead of us.