Wecarejourney - To Champion CARE & support for SMA & disabilities

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

Spinal Muscular Atrophy: From Carrier Screening To Life After Diagnosis For a family of a child with spinal muscular atrophy (SMA), life could be divided into moments of Be

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!

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

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

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

Imagine giving birth a baby, and then finding out much later that he/she has a disease that even doctors don’t know much about.

Imagine having to find information online and sifting through tonnes of information without knowing the end destination.

Imagine feeling hopeless and fearful, and seeing your child grow weaker by the day.

This is just not one story. There are so many similar ones.

Can we work together to change this narrative?

Caregiver series:
A Mother's Heartache - A Journey with Developmental Delays and SMA

Mrs Zarina ( name changed to protect privacy) shares her heart-wrenching story of discovering her child's diagnosis with SMA.

“At delivery, he looked normal. He could move; his legs could also move until day 10. Ten days after that, his condition gradually got worse, like being lethargic up to a month. We went to the clinic for a vaccination at one month and asked the doctor, ‘Why is my child so floppy? His hands were slow to react.’ The doctor said, ‘Benda ini biasalah (This is normal).’

Two to three days after that, I was still not satisfied. I went to the clinic; I went to see another doctor, and he said my child was so floppy and felt like an old cloth. His neck was so weak, and it was then that the doctor asked me to go to the hospital. Then I found out that my child has SMA. I felt so fearful as I didn’t know anything about it.”

In sharing this story, we honor the strength of parents who navigate the challenges of developmental delays and the diagnosis of SMA. Let's come together to support and raise awareness for these incredible families.

Read more about SMA here: https://tinyurl.com/3834wmfw

Do follow our caregiver stories on SMACare page, so you can encourage them through their journey. It doesn’t take much effort; a “like”, and a share to help raise awareness.

At SMACare, we understand that the journey isn't just about the individuals diagnosed—it's about the entire family. Today, we begin a series dedicated to the caregivers who show unwavering strength, love, and resilience every day.

In this series, we'll share:

Their worries and concerns.
Personal experiences related to diagnosis.
The profound impact SMA has on their families.

Join us as we listen to these powerful stories and celebrate the incredible caregivers who make a world of difference.

All quotes are obtained from the study “Living with SMA in Malaysia” journal. You can read more by clicking on this link :

https://tinyurl.com/3834wmfw

Imagine you know there is treatment to slow down a disease your loved one has, but it’s too costly for you to get them.

Imagine seeing your loved one struggling daily to have quality life each day.

Imagine being tied down to care for your loved one, and not having independence to plan your life.

Imagine not being able to go on a family holiday.

Imagine.

This is the live for SMA patients and their families. But it doesn’t have to be. Many families in other countries have been helped by getting treatments. Some young children have their lives drastically changed. From being unable to move independent, to running freely.

Please help make treatment a reality for many SMA families in Malaysia. This is what our hope is.

Please help us raise awareness by simply sharing the many posts from page.

Thank you!

Many Malaysians may not know this.

Many SMA families are going through heartache seeing their loved ones suffer and deteriorate, whilst there are treatments available but it’s too expensive.

We need to bring the cost down. We need the help of our government.

Can you please help the many SMA families in Malaysia? Just be sharing this post in SMACare, and follow the page - this is already a great help.
Thank you.