Do You Know?

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

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

SMA Type IV

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 (English)
Download Care Pack (Chinese)

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

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!”

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.

Please contact us on

•   +6012 5225232
•   wecarejourney@gmail.com, hello@wecarejourney.org

Cough Assist Machine

Cough Assist Machine to help clear secretions from the lungs, and for better breathing. It works by pushing air into lungs (positive pressure) when breathing in, and creating a sucking force (negative pressure) when breathing out. This rapid change in pressure during the different phases of breathing (inspiration and expiration) helps make the cough stronger, to expel secretions naturally.

For more information, download:
Cough Assist Machine PDF

Standards of care for SMA

Get information on how to manage and improve care for SMA. The care pack is available in Bahasa Malaysia, English and Chinese.

Download CARE Pack Here

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