SMA Australia


Phone: (03) 9796 5744

exp carly jonesHello, my name is Carly Jones, I am 27 years old and I was diagnosed at 18 months of age with SMA type 3.

As a child I just wanted to be like everyone else. In school athletics carnivals I would participate in the running races, even though I couldn’t run and I would come last, I once got a gold medal for always trying. I could walk but only short distances and would easily fall over, I could never get up steps, run or get up from the floor but I was always a happy child, everyone used to comment that I always had a smile on my face. Mum took me to hydrotherapy a few times a week as well as physiotherapy, she did all she could do for me growing up and I could not have asked for a better parent.

I stopped walking around the age of 8, as my legs were just not strong enough anymore and I did gain quiet a lot of weight. I did however “walk” around on my knees at home for a further 2 and a half years. When I was 11, I had spinal surgery due to severe scoliosis. This was a scary time in my life as I almost lost my life. I was in hospital for 2 months and in High Intensive Care for a few weeks of that time.

I was your usual teenager, I went out and had fun, and school wasn’t my favourite thing even though I was good at it. I loved life (still do) and throughout my teenage years I never felt like I lost a noticeable amount of strength except for in my jaw. I had tendon releases behind my knees and ankles when I was 15 and I was in hospital for a few weeks. Since then my legs have tightened a bit but we still do as much physio and try to keep my feet and ankles as straight as possible. Around the age of 17, I lost significant strength in my jaw, it became harder to chew hard things like hard vegetables and biting into a steak burger etc.

I left school half way through year 11 when I gained employment with a Disability Employment Agency. This was probably the first time I felt like I was being treated different as I was given the easiest tasks and felt they were not using me to my full potential. I left after 4 years as I felt I wasn’t going anywhere. I was without work for 4 years then two years ago I was successful in gaining a role for Cover-More Travel Insurance. I have loved my time at Cover-more, I have gained so much experience and, been put through great training and been treated the way an employee should be.

Since starting my employment at Cover-More I have noticed that I have lost a huge amount of strength. In only these two short years I have gone from being able to lift myself up from my chair so I can put clothes on, being able to use a ceiling hoist to put myself on the toilet – to not being able to lift myself up without assistance, I can no longer use the ceiling hoist on my own and my arms are losing strength at such a rapid rate in recent times that this scares me so much! I cannot remember a time where I have lost such a significant amount of strength in such a short period of time.

I do not want to lose any more strength. If Spinraza could even help to stop the progression of this disability, it would mean more to me than anything!
It’s so scary to not know the fate of your own future but to at least have peace of mind that the disability will not get any worse, would be beyond amazing!