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About SMA SMALL Story Story Of Joe & Bib


1 in 50

carry the defective

SMA gene

Prevention is the best cure.
Find out more.


Do You Know?

Do you know how many babies are born with SMA (Spinal Muscular Atrophy) in Malaysia every year?

An estimated


babies are born in Malaysia each year.

1 in 10,000

babies is born with SMA (world statistic).

That means 50 babies are born with SMA every year.

This is almost 1 in a week.

Isn’t that a lot? That’s why SMA is the most common rare disorder.

4 Types of SMA & its Symptoms

SMA Type I (Severe)

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.

95% will not make it past their second birthday.

SMA Type II (Intermediate)

Age of onset is 7–18 months

  • Delay in meeting motor milestones, or failing to meet milestone entirely
  • Can sit up without help or with assistance, but unable to walk and require a wheelchair
  • Life expectancy may be shortened

SMA Type III (Mild)

Age of onset is 18 months onwards

  • Children are able to stand and walk initially, but will grow weaker and many need to use a wheelchair
  • Chewing & swallowing may be affected later
  • Life expectancy is normal


Age of onset is mid-30s onwards

  • Late onset, and similar to Type 3, but is less severe
  • Life expectancy is normal

About SMA

What causes SMA?

A mutation in the survival motor neuron gene 1 (SMN1)

This leads to missing neuron protein critical for nerve function & muscle control

Download Care Pack

How is SMA inherited?

If both parents are carriers of SMA, there are 3 possibilities:

Who’s affected by SMA?

  • 1 in 10,000 babies
  • It affects any race or gender.
  • 1 in every 50 Malaysians is a genetic carrier of SMA

Early symptoms of SMA?

When a child’s growth is delayed & has difficulty in:

  • Holding head up
  • Rolling over
  • Sitting up
  • Standing
  • Walking
More Stories

A SMALL story
of hope for you

The BIG reason
why we’re here

Our Story Our Vision and Mission C.A.R.E

Our Story

“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!”


Our Vision

To champion C.A.R.E and support for families with SMA & disabilities

Our Mission

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.

Support for Parents & Families

We provide these programs and services:

  • Assistance and support for your child's care & development.
  • Guidance to understand and access the products, programs, and services that your child may need.
  • Parent-to-parent connections with a parent "mentor" who has a child with a similar diagnosis and is experienced at providing information and support.
  • Referrals to agencies, organizations, and community resources with expertise to meet your family needs. This includes genetic testing and counselling especially for SMA.
  • Fund raising assistance and events.
  • Special needs planning –disability benefits, special needs trusts, guardianship, coordinating family assets and comprehensive financial planning, creating continuity of care documentation, and planning for post education.
  • Download Care Pack

Please contact us on

Check out our
SMALL shop

for a BIGGER cause

Joe & Bib Giving Project

Thank you! Your contribution, BIG or SMALL makes a huge difference!

With your support, We CARE Journey is able to:

  • Assist families with SMA to find answers to difficult questions when parents first learn of their child’s diagnosis and as health conditions change
  • Create new opportunities for children with disabilities and their parents
  • Empower parents to advocate for their children in all areas of care
  • Help parents find solutions to hard problems through education and training, and to ensure that ALL CHILDREN have equal access to education

We accept donation in the following form:

Maybank Account Number: 512231392941
Please email us with your details:

Join us on this
SMALL mission

and make a BIG difference


+60 12 522 5232

Suite 105, MBE Uptown,
No 54 GF Jalan SS21/58,
47400 Petaling Jaya,
Selangor, Malaysia