Wecarejourney - To Champion CARE & support for SMA & disabilities

13/10/2025

A CRITICAL APPEAL TO OUR LEADERS: FUND LIFE SAVING TREATMENT FOR SPINAL MUSCULAR ATROPHY (SMA) IN

To the esteemed Ministers, Members of Parliament, and Heads of the Ministry of Finance and Ministry of Health,

We urge your immediate attention to this short video, which outlines a profound challenge facing Malaysian families: (SMA). This is a treatable condition, but without guaranteed funding, families are left in crisis.

The National Budget is the moment to translate policy aspirations into actionable, life-saving commitments. We must move beyond reliance on ad-hoc charity.

Our Core Policy Asks for Budget Allocation:

1 - Establish a Ring-Fenced Allocation for SMA Treatment:
The catastrophic cost of SMA therapies requires a dedicated, protected fund within the national budget. This "ring-fenced" mechanism managed by neurologist with the support of multi-disciplinary team is essential to ensure sustainable and continuous access to life-saving treatment, providing budgetary certainty where there is currently only desperation.

2 - Commit to Transparency and Good Governance in All Rare Disease Funding:
We respectfully request that all allocations for rare diseases be governed by clear, published criteria. Transparency in the distribution process is paramount to achieving health equity and building public trust. This is a call for a fair process to ensure that funds reach the most urgent and deserving patients across the entire rare disease community.

Investing in SMA treatment is a strategic investment in the human capital of Malaysia and a fulfillment of our commitment to inclusive healthcare. Your decision this budget cycle will define the government's stance on protecting the lives of its most vulnerable citizens. Close to 90 countries around the world treat and save lives from SMA.

Please watch the video and ensure these allocations are secured:
Treat SMA in Malaysia (Eng subtitles)

01/10/2024

Please Don’t Scroll Past 🙏

While we are scrolling through our feed, a child with SMA (Spinal Muscular Atrophy) could be fighting for their life in a hospital bed.

While we are scrolling through our feed, many SMA children are facing serious health challenges, weakened by a disease that affects every part of their body.

Please don’t turn away. Please take just 1 minute to help make a difference. Your signature on this petition can help ensure these children get the treatments and support they desperately need.

Please share to your friends and family too, and urge them to sign too.

Take a stand for families who are too weak to fight alone. Together, we can make sure they get the help they deserve. Thank you.

Sign here: https://chng.it/cnhcBW9FqB

Kementerian Kesihatan Malaysia

22/08/2024

For a family of a child with spinal muscular atrophy (SMA), life could be divided into moments of Be

03/08/2024

August is SMA Awareness month and SMACare is running a fun contest - to raise awareness, and to spread positivity for caregivers of SMA patients.

Do consider joining. Let’s use social media for good ⭐️

Please read the instructions carefully, and have fun!

31/07/2024

Her sweet smile melted our hearts.

Only 4 years old, but have endured much in life.

With treatment, Ayra has shown improvement, and for her and her family, it has given them hope.

Please help us keep their hopes alive by sharing awareness about SMA and the need for life-changing treatment.

24/07/2024

The latest video on our brave Branden and how treatment has improved his strength and mobility. Behind his smile is a fierce determination to have a life that is fulfilling and meaningful.

Please help us raise awareness to halt the progression of the disease. We need support and funding for treatment which is expensive, and in some cases, life long.

23/07/2024

See how much Mandy has improved since starting treatment for less than a year.
This is the difference treatments can make in the lives of SMA patients.

There are so many more that need treatments but the high cost of treatments is just too much to bear on their own.

Can Malaysians help raise awareness so that we can get our government to help support with funding?

15/07/2024

Families of patients with SMA walk a lonely journey. Few people understand the constraints SMA cause to not just parents but siblings. It’s a heavy burden. Let us do what we can to make it lighter. Knowing that more Malaysians understand and support them is the least we can do.

The Impact of SMA on Families and Caregivers' Social Lives

Caring for a loved one with SMA profoundly impacts families and caregivers, often isolating them from social activities and altering their daily lives. Here are some heartfelt stories from parents who have faced these challenges:

Mrs. Nuri, Mother of Two Deceased Children with SMA Type 1

“I was so focused on my child that I would never, not even once, turn away from her in the room. Also, after she had finished feeding, I would just sit in the room. I did not cook, I did not go anywhere because I was scared that she would have difficulty breathing. After having two children with SMA, I became paranoid. I became very scared. I had like a phobia too, as every time my child choked, I was scared. My hands shivered.”

Mr. Bala, Father of Two Deceased Children with SMA Type 1

“My wife and I gave 100% to him. We sat at home only. We didn’t bring him out. We got worried if we brought him out—worried that it would be easy for him to get an infection.”

Mrs. Xian Mei, Mother of Two Children with SMA

“I work. My hubby is also working, but men are tougher. Women, when we return home after work, we will be stressed—stressed from work and bring it home. Sometimes, I feel burnt out.”

Mr. Charles, Father of a Man in His Early 20s with SMA Type 2

“I tend to cut down on all my social activities. Furthermore, going out as a couple has become a rare occasion, as at least one parent has to stay at home in the evening.”

Mrs. Padma, Mother of a Deceased Child with SMA Type 2

“For family occasions, kenduri, weddings, I would reject invitations from all my relatives; I never went for any.”

Mr. Darren, Father of a Pr***en Boy with SMA Type 2

“Our lifestyle changed. For me, I like sports, but I cannot do that now because my child cannot play sports. I like jungle trekking and camping, but we cannot do that too.”

These stories highlight the tradeoffs and adjustments families make to care for their loved ones with SMA. Let's support and raise awareness for the resilience and dedication of these families.

To read more: https://tinyurl.com/3834wmfw

11/07/2024

Please help share to raise awareness so that deaths like this can be prevented.

Caregiver series: Coping with Diagnosis: A Heartwrenching Journey

Read the heartwrenching experience shared by Mrs. Kumari (name changed to protect privacy), whose SMA child passed away at two years of age. Through tears, Mrs. Kumari recounted how she and her husband went through a very distressing experience while waiting for the diagnosis at the hospital.

“The doctor asked us to sit. I couldn’t sit, I couldn’t be calm because I felt so cold, and I couldn’t stop shivering.

When the doctor said your child does have SMA, I was stumped, I was hugging my baby. I was numb, felt dizzy, felt like fainting. I said, Am I dreaming? Not only is this a disease I don’t know about, but suddenly you say there’s no cure?

When the doctor said there is no cure and added that she would have a short lifespan, maybe one or two years, for me, I cried until there were no more tears. My husband was crying, I couldn’t look at his face.

I was strong as long as she was there, I said in my heart, Never mind, accept it... accept it, it is the will of God.”

In sharing this deeply personal and painful journey, Mrs. Kumari reminds us of the immense strength and resilience parents find within themselves, even in the face of the most devastating news. Our thoughts and prayers are with all families affected by SMA. Let us continue to support and advocate for more research and better treatments.

To read more: https://tinyurl.com/3834wmfw

10/07/2024

Imagine waiting a whole year to get an SMA diagnosis. Every day feels like an eternity as you watch your child's symptoms worsen, not knowing what’s causing it. The uncertainty and fear are overwhelming.

Please, let us not let this be another heartbreaking story for another family. Let us help raise awareness.

Caregiver series: The Challenging Journey to an SMA Diagnosis

Mrs Chan ( name changed to protect privacy) bravely shares her long and difficult journey to reach a diagnosis for her son with SMA type 2:

“After he was two, he fell sick and was diagnosed with pneumonia and got admitted to a university hospital. He was treated by a paediatric neurologist, and after the doctor checked him, he said it looked like SMA but wasn’t sure. He suggested taking blood for the test, but if it was sent to IMR (Institute of Medical Research), it would cost around RM700. I was okay with it even if it needed to be paid.

We waited for almost a year, and when I asked for the result, he said the file that contained the documents was lost, but via conversation, he said it’s confirmed to be SMA type 2. That’s how I found out. You imagine how I felt after waiting for a whole year.”

This story highlights the immense challenges and uncertainties families face in seeking a diagnosis for SMA. We admire the resilience of parents and caregivers who persevere through these difficult times. Let's continue to raise awareness and support families navigating the complex journey to an SMA diagnosis.

To read more: https://tinyurl.com/3834wmfw