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SMA Australia

SMA AUSTRALIA

Phone: (03) 9796 5744

Chantel BongiovanniI have only ever known a life with Spinal Muscular Atrophy. It has been with me for as long as I can remember, even if I didn’t have the words or education to understand what SMA was. It was just there.

It was there as a 3 year-old; my mum making me stand up against a wall and timing me to see how long I could stand up before I dropped. It was there when I was 5 years old and I went to school and realised that I wasn’t like the other kids because I was tired all the time. It was with me when I was 8 years old and after a short illness, realised I suddenly couldn’t walk around my house anymore. It was there when I was 12 years old and got my first electric wheelchair. SMA was also with me when I lost the ability to sit myself up independently. It was there when I was 19 and had to finally give up trying to stand up because I could no longer force my body to hold my own weight anymore. It’s been with me all those years and it’s with me now, a 28-year-old woman trying to keep the capacity to use her arms and hands for as long as possible.

Today, most of my energy is spent trying to keep my body going amid trying to complete a PhD, while trying to hold down a job, while trying to volunteer and participate in my community. The reality that I avoid telling people is that it is really, really hard. It is so exhausting to fight everyday against a body whose capacity is always changing. It’s not even fighting for the big things, it’s all the little things in between. It’s fighting to maintain the ability to press buttons at pedestrian crossings so I can continue taking myself to university so I can work. It’s being able to open and close my own purse so I can buy lunch. It’s feeding myself. I worry about those kinds of things a lot, because without all those little things, I can’t do the bigger stuff. I do physical therapy multiple times a week just to hold onto the physical abilities I have right now, it’s something I’m always prepared to do, but it is like trying to hold back an ocean with your bare hands; it is a fight I will always lose. No matter how hard I work, I never get the pay off.

There is no option for adults with SMA without Spinraza, and without it, my life will take the course of so many others with SMA before me; I will lose continue to lose my physical capacity. It is fact is that all recent research from Biogen has indicated that the drug can provide meaningful value in the lives of all people with SMA, regardless of age. Something like access to Spinraza would mean that I no longer would have to fight the little things as hard, and that I can take on the bigger things in my life. Spinraza would make management of the progression of SMA that much easier.

With access to Spinraza, I would have an increased capacity and resilience to live as I am living right now. I think that’s the important point to consider. Without access to a drug like this, my capacity for independence will wane, meaning less capacity for work, for study and it will mean an increased dependence on support. For me, Spinraza means being able to leave my house independently, being better able to care for myself and my family, being able to work increased hours, and being able to contribute to my community.

Spinraza has the chance to rewrite the narrative of loss for so many adults with SMA; it could literally change the course of my life, and the lives of so many other adults too.