SMA Australia


Phone: (03) 9796 5744

exp khepton22 years old with SMA type 2

I should have a remarkable story to write, but I don’t. SMA sucks, it’s hard and the hope of Spinraza is so close that it stings to know that I can’t access it. I’m so glad for the future generations to know that they won’t have to experience what I have, that said – why can’t I get the help I need too? Watching the international advancement of Spinraza has been so promising, seeing on social media the immense physical improvements patients have made is so exciting. However each time I see a post I begin to feel a little more envious and discouraged.

In January of 1998, before I turned two years of age I was diagnosed with Spinal Muscular Atrophy type two. At the time of my diagnosis, there wasn’t a lot of information available about how to treat SMA and it was predicted then that I wouldn’t live past the age of ten.
Now at the age of twenty-two, I live a life that is being sustained by a lot of medical equipment and constant physical support. I’ve had to lower my standards and my plans to allow for my body to take as long as it needs to function on a basic level. I certainly don’t live a life like many of my peers, because of my physical condition I have to take many things into consideration. What if my normal doesn’t have to be the norm?

In year ten (2011) I found myself deciding what I wanted to do with my future career. At this time I was certain I wouldn’t live past the age of twenty-five or so, and that therefore my contribution wouldn’t matter. I was aiming as low as I could – a part-time office job where I would aim to go unnoticed. I was of the opinion that I didn’t matter so I would contribute only as much as I had to, earn a little money and wait to die. I was severely depressed at this time, and there was no sign of any medical advances in relation to SMA.

In year twelve (2013) I was graduating high school, again deciding what to do with my future. I had experienced a lot of emotional trials and growth by now and came to the conclusion that I should be using my experiences to help others – to be what I needed when I was younger. I enrolled at university to pursue psychological science and spent eighteen months studying. I became quickly disheartened that my physical ability was and is unable to keep up with the mental ability I possessed to pursue a career as a clinical psychologist. Again there was no sign of any medical advances in relation to SMA, so I dropped out of this degree and pursued on in media that would be more reasonable allowing for future deteriorations of my body.

Its now 2018 and I’ve almost finished my media degree, but I still dream of what it would be like to have finished my psychological science degree. Perhaps one day I will and with the help of Spinraza or other research in the works, I could help others. One day my physical ability might work at the same pace as mental ability, and I might have the stamina to listen and to talk with someone and not tire in the first fifteen minutes. There is great hope for future the future of SMA patients with Spinraza and other research in the works, all I ask is that my normal doesn’t have to be the norm for much longer.