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SMA Australia

SMA AUSTRALIA

Phone: (03) 9796 5744

Natalie MillerdMy name is Natalie and I am 27 years old with Spinal Muscular Atrophy type 3.

When I was younger I was quite strong. I could stand up, walk short distances and even dance along to my favourite music. During my childhood and school years I was always treated like all of the other kids. I was always involved in school activities, where other children would dance around me and my wheelchair in a school assembly, sports activities would always involve some type of ball throwing or catching and my social life was never a quiet one. I was the only child in primary school in a wheelchair so I knew I was different, but nobody ever treated me like I was an outcast or like I was “disabled”.

At the age of 11, I took my last steps as my body just got too heavy and I wasn’t able to hold myself up due to my muscles becoming a lot weaker. Growing up I always knew I was different but, I guess I didn’t expect the day would come where I couldn’t even stand up, or I wouldn’t be able to physically roll myself out of bed on my own each morning.
As an adult I learned to accept the challenges SMA brings. I learnt to accept I will never be able to hold my arms up above my head and brush my hair into a pony-tail, I’ll never be able to drive or live a “normal” life like all of my able bodied friends will. I am a 27 year old who still has my mum get me on and off the toilet every day however I have learnt to accept this, and to cherish the people in my life who continue to help and care for me. I also have carers come and go for showering, dressing and most of my daily activities.

Even though I have SMA, I live my life as best as I can. I love travelling the world and have been too many different countries including Hong Kong, Scotland, England, Paris, New Zealand and USA with many more places on my bucket list!

I have also been with my partner for 7 years and will be getting married to him in October 2018. My partner met me and instantly accepted “me and my SMA” and has loved me for me ever since. Together we recently did a 5 week trip in our four wheel drive to the middle of Australia to see Uluru. My disability didn’t stop me from exploring my country and camping for 5 weeks along the side of the roads!!

I’ve currently been in my job for 7 years as a receptionist and I absolutely love it.

As an adult with Spinal Muscular Atrophy I feel Spinraza would be a huge benefit to me and many others. If it means I would even be able to keep and maintain the small amount of muscle I currently have without the fear of becoming weaker and more dependent on others it would be amazing.
One way or another throughout life I have been discriminated against due to my disability. It would be amazing for the PBAC to not discriminate against adults with SMA and approve Spinraza for everyone not just children under 18 years old.