An estimated
babies are born in Malaysia each year.
babies is born with SMA (world statistic).
That means 50 babies are born with SMA every year.
Isn’t that a lot? That’s why SMA is the most common rare disorder.
Age of onset is <6 months
This is the most severe form of SMA. Within the first few months of birth, baby may have severe muscle weakness, poor swallowing reflexes and breathing.
Age of onset is 7–18 months
Age of onset is 18 months onwards
Age of onset is mid-30s onwards
This leads to missing neuron protein critical for nerve function & muscle control
If both parents are carriers of SMA, there are 3 possibilities:
When a child’s growth is delayed & has difficulty in:
“Branden quietly came into this world. His cry was silent, and he was rushed to the intensive care unit to treat pneumonia and fluid in his lungs. He recovered after a week, but the joy of having him home was soon tested by constant worries over his general weakness.
Upon celebrating Branden’s first birthday, we decided to have him undergo a genetic test.
As parents, we shared in Branden’s older brother Jaden’s excitement about having a younger brother. They would be able to run and play together, to make friends, go to school and learn and discover the world!
These hopes were shattered that day the genetic test confirmed that Branden had SMA.
We were told it would be a hurdle just to get him to his next birthday. The hopes we’d had were crushed. There are no words to describe the trauma, pain, shock and sorrow we felt upon learning his diagnosis.
Why him? Why us? Why are we at fault? What’s going to happen?
We’d felt real loss, but every new day still dawned. We begin to get a change of perspective. Instead of looking down, we started looking up.
We started to accept what we can’t change, and we focussed on what we can do rather than what we can’t. We will accompany Branden on this journey.
He faces difficult challenges, but his wonderful attitude and strong spirit makes this journey a meaningful, inspiring and a joyful one!”
WATCH OUR STORY VIDEO
To champion C.A.R.E and support for families with SMA & disabilities
Caring and Connecting families with SMA and disabilities to support by taking Action and creating Awareness, promoting Readiness and Responsibility, and by Empowering affected families through Education.
Care and Connection We care for families with SMA and disabilities by connecting them to support and knowledge, through digital media, stories, and events.
Action & Awareness We take action by creating awareness that SMA is the No.1 genetic killer of SMALL ones & that 1 out of 50 are carriers of the defective SMA gene.
Ready & Responsible We aim to raise the level of readiness amongst the public when it comes to dealing with SMA, and to promote personal responsibility by getting tested.
Empowerment & Education We empower families with SMA through educative information and provide support by directing them to the vital therapies, facilities, tools, and funding.
