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SMA Australia

SMA AUSTRALIA

Phone: (03) 9796 5744

Tyren EdwardsHi my name is Tyren Edwards. I have type 3 SMA.

I was diagnosed at around 1 year of age by Prof Byron Kakoulas.
When I was young I could walk, run (awkwardly and not fast) and play but at around the age of 14 my condition got a lot worse.
At around the age of 32 I needed a wheelchair for longer distances, I have had many falls which have resulted in two fractures to my back and a badly broken femur. I am now permanently in a wheelchair.

I am 44 and have a wonderful partner and two beautiful children, Keely 13 and Isla 11. I work full time as a medical scientist, my work has had to make alterations to the workplace to accommodate my situation so I can get around. I am so appreciative that I can work, it gives me pride to show my girls that anything is achievable if you try hard enough.

I really would love it if there was something out there for adults with SMA to help in improving the quality of life, I want my girls to have an active dad as possible. I think people still need goals and things that make them happy. Mine is my family and boats I do have a ski boat that I need to get helped in and out of. I love going out with family and friends and watching their kids skiing. The smiles on their faces are priceless even though I can’t do it.

I have only just heard about Spinraza through my mum and have been waiting for something like this that supports adults with SMA. I really need some hope that there will be support and funding for adults like myself and that we also can have an improvement in our quality of life.

Regards and thanks Tyren Edwards.