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SMA Australia

SMA AUSTRALIA

Phone: (03) 9796 5744

exp fillerMy Name is Lina Markaboui, I am one of three adults in my family that suffers from Spinal Muscle Atrophy (SMA) and have type 2/3, we are the only other family with three adults with SMA, in the world. There’s only one other family that has that same number of adults as we have, and that family are in Spain. We had only find this out from the specialist at the neurological team that takes care of our health, in regards to SMA, Down in Randwick Hospital.

Billy and I had participated in the test that Doctor Anthony Kerinin’s team had arranged in 2000-2013.

I am 46yrs old and Artist/Musician and have currently started writing a novel book, I have been doing for the past two years already.

The hardest part about trying to be extremely expressionist, isn’t easy when you have a disability like SMA. That can definitely pull you back and slow your ability, extremely.
The fact that our government, is selectively allocated PBS for those who are between the ages of 0-18. Only. This however has meant that my family misses out on the treatment.
In prospective of what it would mean to my family and, despite the difference in the two age groups. It really doesn’t set us apart from our condition. In appearance were both effected in the same way, as the trails will tell you in the end, which is what we would eventually to see happen.

Billy: is wanting to study history and political science, that would be if he was able to get the assistance of Spinraza which, he would take it up professional, because he can’t move very well most days and when he gets cold he isn’t able to drive his wheelchair properly anywhere outside.

This has the same effect on all three of us.

Knowing that we, still try to do something with our lives, however difficult it is, or how ever small it is we, still try to get out and actually do something with our lives. We’ve never actually achieved anything that we’ve started which, is always due to the effects of our muscles weakening. I can say it takes us so long to get around to doing anything that we’re chosen to do in life.

Fouady: is currently doing art and studying at TAFE and online studies. She’s having trouble with her driving around the house and outside of her house. It’s the weakness of her condition that has effect her trying to do her daily routine in her life that she’s been doing for some time now but she can no longer continue to attempt to there’s routine without the treatment of Spinraza. To give her give her back her abilities that she’s been doing for many years.

The fact is that we are currently trying to find out how we can get to trail this treatment of Spinraza before we’ll end up weakening our muscles. And the current situation will be that we’ll be trying to make this treatment work on a condition, that has worsen on adults with SMA. My current fear is that it won’t work for us because it’s possibly to late, which it could’ve been avoided by allowing us the treatment as soon as possible, so that the outcome would be greatly improved for.