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SMA Australia

SMA AUSTRALIA

Phone: (03) 9796 5744

Talia AlsopEver since I was a child I dreamed that one day they would find a cure or treatment for Spinal Muscular Atrophy. I hoped that if I were patient enough, that one day it would happen. And now a treatment, after years and years of waiting, is finally here. Yet it never occurred to me that when a treatment was finally discovered, I would be considered too “old” at 23 to receive it.

I was diagnosed with Spinal Muscular Atrophy Type 2 when I was 18 months old. I never walked. SMA is a progressive genetic neuromuscular disease. It not only affects obvious muscles such as arms and legs, but also muscles used for things such as breathing and coughing. My parents were told that I would only get weaker as I got older, and that there was no treatment, nothing could be done.

When I was 3 years old I got my first electric wheelchair. Apparently when asked what I wanted my wheelchair to be like, I said I wanted it to go fast. As a 3 year old I loved my wheelchair, it gave me the independence to go where I wanted and the freedom to keep up with other kids. For me it was just normal, and of course I had lots of times where I wished I were just like everyone else, but I didn’t let it stop me from having a great childhood. My parents never treated me any differently, they didn’t want me to miss out on things and allowed me to be as independent as possible. When I think back on my childhood I think of spending hours in the pool, family holidays to the beach and our cabin by the river, birthday parties, visiting friends houses, growing up with my siblings on five acres and playing with our dogs. I loved anything to do with drawing or colouring, and would spend hours at it.

I remember how excited I was to start Primary School (mainstream). Doctors had told my parents I would be too weak to hand write; yet I never had any trouble writing. I was good at school, it always came quite easily to me and it was something I could do independently, and excel at. I loved books, writing, and painting. When I was nine I had scoliosis surgery to put steel rods in my spine to help lessen my spinal curvature (a common yet major surgery SMA children often need). Primary School went by, and although my disease did progress, it was slowly, and luckily I always kept the use of my arms. Although my arms are weak, they have given me much independence.

I started High School (mainstream) in 2008, and graduated in 2013. Like Primary School, I enjoyed High School. I liked studying, and was a high achieving student. The fact that I could be independent and I never needed any physical help writing or doing my work meant a lot to me, and I loved that I was good at studying. I made life-long friends, and really enjoyed school. Apart from breaking my hip in Year 8 due to my osteoporosis, High School went pretty smoothly health wise. For Year 12 I studied English, Art, Psychology, Visual Communication and Design, Further Maths and Literature. I hand wrote all of my exams in the same time as everyone else, and got an ATAR score of 91%.

I always knew that I wanted to go to University, and although I had a lot of interests, I chose a degree that I was passionate about, and would give me an achievable job in the future. I went to University (on campus) and studied Visual Communication Design with a sub-major in Professional and Creative Writing. I went on to do my honours year, which I finished last year. Through everything my mum has always supported me – I wouldn’t be the person I am today without her. This year I have just started my own business working from home as a freelance designer and artist. I have combined my passions of graphic design and art, and I create digital floral and foliage artworks that I sell as limited edition prints. Ever since I was young I dreamed of being an artist, but thought that I would never be able to paint large enough works. Yet I have adapted my technique with digital works and my graphic design skills, allowing my art to be printed as large as I like. I have only just started out, but have already been approached by two art galleries, which my work is currently in. I hope to be successful and keep following my dream.

I have noticed in the last year that my arms are getting weaker. It is a terrifying thought. I have always tried to be as independent as possible. I try to live my life not defined by my disability, as I am so much more than that. But it affects me everyday, and I can’t deny it. I am thankful that my progression has been slow. But the thought of getting older, of getting weaker than I already am, of my arms losing strength, of my lungs getting weaker, is frightening. I have spent my whole life wishing to be just like everyone else. Wishing to be normal. Getting older just makes me want it more. I have the most amazing family, great friends, my own business – I don’t want to get weaker.

It is difficult looking back on yourself as a child and being jealous of how physically strong you were. Of how much more energy I used to have. I don’t want to look back on myself now in the future and be jealous of the strength I have now at 23. Spinraza will help me, and every other adult with SMA, know that it won’t just keep getting worse – that it can even get better. I would like to keep living my life without getting weaker. Yet knowing that the first viable treatment ever is out there, a treatment that would stop my progression, but that I can’t access it, is devastating. After waiting for it for 21 years, it never occurred to me that the first treatment wouldn’t be available for everyone with SMA (as we all have the same disease). I understand that it is very expensive, but surely you can’t put a cost on people’s lives and futures. People shouldn’t be excluded just because they are older than 18.

Like many adults with SMA, the question always echoes in the back of my mind; how much more strength will I lose? We all deserve this treatment. We have waited so long for this. I am so happy for all the children with SMA that can access this life-changing treatment, but I hope the government doesn’t forget about everyone with SMA who is over 18. During all our lives so many choices have not been available to us, but this one can be. We deserve this choice too.