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SMA Australia

SMA AUSTRALIA

Phone: (03) 9796 5744

exp yasmeen

My name is Yasmeen, a 27 year old graphic designer from Melbourne. I was diagnosed with SMA (Spinal Muscular Atrophy) when I was one year old. The onset of SMA may have come when I was around 4 months old cause I was never able to sit up independently or reach the normal milestones of rolling over and crawling. So my parents took me to many different doctors. Some said, ‘Don’t worry, she’s just flexible, she’ll be a ballerina’, others said ’Just put her in the sun, all she needs is some Vitamin D then she’ll be just fine.’ It obviously didn’t work. The doctors, in the end, told them that I have Spinal Muscular Atrophy, a very severe disability which will greatly impact my mobility to the extent that I cannot even shoo a fly. The doctors informed my mum that I wouldn’t live more than four years, but as you can see I lived a lot longer than that!

As a result of my muscle wasting, I also have scoliosis of the spinal column. I was supposed to have a spinal fusion operation when I was 10, but at the last minute, the doctors decided not to operate, as it was too dangerous for me and my respiratory system wouldn’t be able to endure the operation. They didn’t want to take the risk, so I didn’t do the surgery. To this day I’m only living with 15% of my lung capacity. Which is a miracle.

I’m convinced that when God takes something from you,He gives you things that are much better in return. In my case, some of these things are my friends and family. Without them, I wouldn’t be where I am today.

The other thing is my hobby. My mum imagined that my hobby would be reading like her, but to her dismay, it’s not reading! Ever since I was young, I’ve loved to draw, and my mum would encourage me by looking for lightweight drawing materials or supporting my arm when I draw. When I was 13, she enrolled me in a summer art program with my cousins. Within the first week, the teacher was astonished by the quality of my work and recommended that I take part in an international exhibition (for artists with disabilities). Ever since then, I’ve realised that art is not just my hobby, it’s the only way that I feel like I’m the same as everyone else. Despite my weakness, It’s something that I’m able to do independently. It makes me feel free and that I can do anything without boundaries. I feel like I can pour out all my energy into it and everything inside me comes out in my art. I knew that I could never live without it.

After a few years, I got a bit weaker, and I was no longer able to hold a pen or brush. But I found other ways to do my art. I could ever give up art that easily. I taught myself Photoshop and Illustrator. My dream was to study applied arts. I got offered a place at Grenadi School of Design and graduated 2013.

Now I work as a freelance designer/illustrator. I also volunteer at a few NGO’s internationally. In 2012 I was given the opportunity to live a TEDx talk at TEDxCairo. See the video below.

Just like anyone else I go through periods when I feel I can’t go on and I lose hope. Realizing how weak I am and how not being able to do the simplest things, like a little cough, could end my life in a moment.

Up till now I’ve somehow got through all of the hospitalisations and close to death experiences miraculously.
I truly believe that I was given a second chance for a reason. A reason which I may not know now and I may never know it, but it is due to God’s will that I am still here.

Getting access to Spinraza is crucial for someone like me. Seeing a small improvement or even just preserving the tiny movement I still have would make the world of a difference. I’m thankful that I’m still able to do my art with the limited movement I have in my fingers and I hope I never lose it.
Despite the difficulties I experience, I want to use my art to do something that brings joy to people’s hearts, and to do something that makes a difference in their lives. To make a positive difference that people will remember me by before I leave. I don’t want anything more out of life.

Every one of us has circumstances in their lives; everyone has trials and obstacles that God gives us for a reason. A reason which may not be apparent to us. But we have the choice, either to break down, give up and fear tomorrow or to get up and live each moment to the fullest and try our utmost to make a difference in this world, a difference that can begin by the simplest of things like just a smile.