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SMA Australia

SMA AUSTRALIA

Phone: (03) 9796 5744

exp fillerMy name is Hassan Kalache. I’m a 43 year old male with Type 3 SMA. At the age of 17 I was diagnosed with SMA. At the time I was simply told that there is no cure for SMA and there was nothing that could be done.

I never really understood what this was and how I got this, even my parents never really understood what this meant or how this condition affected me.

Throughout my schooling years I participated in lots of sporting activities including soccer, basketball, football and cross country, both at school and clubs. It wasn’t till I was in it my later teen years that I noticed my running and how I stood up was constantly changing. Going up and down stairs unsupported became challenging and by my early 20’s I needed some support for stairs. Today, I no longer am able to run or walk long distances and need support to sit up, walk short distances and complete basic chores.

I live my life in fear of falling, as falling down has become a common occurrence. It is hard having your child see you fall and see that you need help to sit and stand up.

I guess the hardest part for me is giving up or accepting what my new limitations are as they are forever fading. I’ve tried many things to help maintain / improve my mobility, things like chinese medicine, acupuncture, physiotherapy and stem cell therapy. I undertook all these in hope of positive results which didn’t happen. I tried to list myself on clinical trials for SMA treatment but have always been told that they are not for my age group. Even in recent times I contacted Biogen and offered myself as a test patient for adult Spinraza testing and was told that there isn’t anything available at the moment.

Over the years I have supported and donated to SMA charities in the hope that one day a treatment can be made available for someone like me.

Thank you for listening to my story.

Regards

Hassan Kalache