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SMA Australia

SMA AUSTRALIA

Phone: (03) 9796 5744

exp d foggWhere do I start? Well it always helps to start at the beginning...

Hi I’m Doug,

According to my mother, I reached all my milestones growing up and I had a pretty normal childhood. At the age of 14 or 15 I started falling down quite a lot and not being able to do the same things as my friends and siblings. My parents sent me to countless doctors and specialists and I spent a fair amount of time in doctor’s rooms and hospitals. After my second muscle biopsy I was diagnosed with Spinal Muscular Atrophy Type 3.

As I progressed through life I noticed that I was not the same as everyone else and my walking ability decreased more and more. At 22, I graduated as a graphic designer which I excelled in and today have the advantage of this great skill that gives me a sense of pride and accomplishment. By age 24 I started using a walking stick then the dependency on the walking stick was slowly replaced with crutches, first one and then two. At that stage I was unable to walk up slopes and walking up stairs was impossible.

I got married at 26 to my soulmate Taryn, who has been my rock and without her I wouldn’t be the man I am today. We knew early on in life that we wanted children together and went for genetic counselling to see what our options were. Our children wouldn’t have SMA but will most probably be a carrier of the SMN1 gene. Then at 28 years of age I became a father for the first time and a whole new world opened when our beautiful healthy girl Taya was born. Fast forward 4 years and my second healthy little angel, Lola was born. My children are everything to me and it brings me so much joy and happiness to see them run and play sports. Because Taya and Lola have a dad in a wheelchair they are very helpful towards people with different needs and that’s a good trait to have in life.

By 32 I could no longer walk the distances I used to, so decided to take the dreaded plunge and get a wheelchair, and you know what? The manual wheelchair wasn’t so awful after all, as it allowed me to go places a lot further than I could walk with crutches. I also added a SmartDrive motor to my wheelchair to get that extra help and addition to my independence.

In 2015 at 35 years old I moved my family from South Africa to Melbourne Australia. It’s been a tough journey leaving family and friends behind and it hasn’t been without its ups and downs where at one point I didn’t know if the Australian government would allow someone with a disability the opportunity to live and work here. We received our permanent residency after 3 years and it’s an amazing accomplishment. I’m grateful for every day I’m here, as Australia is incredibly wheelchair friendly and an amazing place to bring up my girls.

Over the past few years I’ve found that I have less strength and functionality in the left side of my body and a bit of pain caused by muscles overcompensating for weaker ones. It’s not easy to be positive in life when there’s always something negative to bring me down. I must say that when something like Spinraza is announced I have hope, hope to carry on, hope that my anxiety subsides when getting worse and needing more assistance to do my daily tasks, and most importantly, hope for everyone suffering with SMA to have access to the treatment. I’ve found that the only way to deal with SMA and the Spinraza adult treatment deliberation is to take one day at a time and be grateful for everyone I have in my life.