Vivian Goh, 46, has barely left her three-room flat in Bedok since she was 19.

One rare occasion was in 2017 when a hospital’s home care programme arranged for her to visit wax museum Madame Tussaud’s in Sentosa and some other attractions.

Vivian, her mother and a friend visiting the Trick Eye Museum in Sentosa.

Most of the time, Vivian is bedbound and spends her life lying on her bed working online or playing computer games. She suffers from type 2 Spinal Muscular Atropy (SMA), a condition characterised by progressive muscle weakness.

When she was just a few months old, her mother noticed that Vivian was not hitting her developmental milestones. She could not sit unassisted when she was seven months old.

Baby Vivian and her mother.

At 18 months, she came down with a very high fever, the first of many that would see her going in and out of hospital.

When she was two and a half, Vivian was diagnosed with SMA.

Her condition continued to worsen – to the point that doctors predicted that she would not live past her 12^th birthday. But by the grace of God, she lives on today.

“It can only be because of Jesus,” she declared to Salt&Light.

The early loss of her muscles meant that Vivian was never able to walk. As her muscles atrophied, she gradually lost her hand functions and eventually, she could not even sit up.

Young Vivian in a wheelchair.

Vivian is tube-fed multiple times a day, and relies on a machine connected to an oxygen tank to breathe.

Vivian was once able to eat, but is now tube-fed multiple times a day.

Vivian’s oxygen tank and ventilator.

While Vivian lies in her bed all day long, unable to move, eye-tracking technology on her computer allows her to communicate and do some work online. The Eyegaze sensor uses infrared radiation to detect her eye movements across an on-screen keyboard.

Vivian is also able to talk to her 72-year-old mother and her domestic helper who take care of her round the clock.

Her mother had raised her up single-handedly since she was young. Vivian also has an elder brother who lives with his own family.

Bedbound but upbeat

When Salt&Light visited her at her home recently, the feisty and upbeat Vivian shared about her faith journey.

When Vivian was 15, she attended a programme at a social service agency. Some of the staff there were Catholics and one of them asked her if she wanted to know about Jesus. Arrangements were then made for a church member visit her at home and share about the faith.

“He told me and my mother Bible stories such as Jesus turning water into wine at a wedding , the multiplication of the five loaves and two fishes and the various healing miracles of the blind and lame,” Vivian recalled.

“It struck me that in those days, the people could see Jesus in their midst. But for us, we have to just believe,” she added.

Though she had no dramatic encounter with God that day, she made the decision to follow Him and be baptised a year later.

Vivian being baptised at home.

“It was only when I chose to believe in Him that I began to be able to see His hand in my life,” Vivian told Salt&Light.

Time and again, she would witness the supernatural provision of God through the years.

God’s provision over and over again

One year, Vivian found herself in hospital. Doctors told her she needed a buy a breathing machine, and she and her mother wondered where they were going to find the money for it.

In that moment, they saw a male stranger walking towards her hospital bed.

He said: “Jesus told me to give you $500″, much to the shock of Vivian and her mother.

She recalled: “He didn’t know us and we didn’t know him. He was at the hospital visiting another patient. But he told us that as he was leaving the ward, he felt God directing his steps back into the room towards us.”

That stranger’s S$500 became the seed fund for the machine that they eventually could afford.

“I realised that I have a God who loves me and provides for me,” Vivian told Salt&Light. “Every time my mother or I face any problems, we always meet kind and good people who help us or become our friends.”

Vivian’s mother left her job to take care of her daughter singlehandedly.

At that time, Vivian’s mother Ivy Yong stopped working to care for her daughter full-time. Ivy had been constantly taking time off work to bring Vivian to the hospital but felt she could no longer impose on the kindness of her bosses. Vivian’s grandfather was also no longer able to look after Vivian while she was at work.

Though mother and daughter were worried over their finances, God continued to provide for them in different ways.

In 1999, Vivian was featured in the newspaper with a headline that read: “She’s 19. She’s 16kg.” It showed a photo of Vivian’s mother carrying her.

In the article, Vivian expressed her desire to have a computer so that she could design greeting cards to sell.

A reader saw it and contacted the newspaper to be linked up with Vivian so that he could buy her a laptop. He brought a brand new Fujitsu laptop to her at the hospital.

His kindness did not end there: When he found out that she wanted to learn how to use Photoshop, he paid for her classes. When her computer hard disk needed an upgrade, he paid for that too.

This reader, whom she calls “Uncle Boon” has become a friend. And thanks to him, having such equipment and skills were crucial in Vivian setting up her own online shop to stay financially independent over the years.

That article also brought her another friend, whom she calls “Aunty Lee”. Although they were strangers, Aunty Lee would send her a cheque of a hundred dollars every month starting from the time Vivian was 19.

She continued doing this till Vivian turned 37, and the two finally met for the first time when Aunty Lee attended Vivian’s 26^th birthday party.

A Christmas party with friends at Vivian’s home.

Over the years, God has sent many other people to help Vivian and her family with various needs: A woman who worked at a company that supplied medical gases for healthcare helped Vivian receive free oxygen cylinders for years; and a doctor who orders and pays for her milk powder every month.

One year, the haze in Singapore was so bad that Vivian and her mother keep their windows shut. A friend’s friend bought an air-conditioner for them and gave them money for their electricity bills. The technician who installed and now services her air-con also does not charge her for his visits.   

Meeting not just her needs, but also her wants

“God brought all these people into my life, especially in times of need, but I realised that He also cares about my wants,” Vivian said.

Vivian loves Barbie dolls and has amassed a huge collection over the years. When Salt&Light visited her home, we saw 400 Barbie dolls dressed in a myriad of costumes – a number of them are limited edition and rare – displayed all over the flat.

The view that Vivian faces everyday – that of her extensive Barbie doll collection.

Vivian’s first Barbie doll was a present given to her from her mother, who had saved up to buy it for her.

Many of those dolls were subsequently given to her by friends who knew of her interest in them.

Vivian, her mother and a friend (who read about her from a newspaper article) turned godbrother shopping for barbie dolls at Toys R Us.

“I love Barbie because she is beautiful and I wish I could be like her. When I could still use my hands, I enjoyed dressing my Barbie dolls up in her pretty clothes,” said Vivian, who still keeps her nails long now for manicures whenever an occasion calls for it.

Limited life expectancy 

From the time she was 12, Vivian had found herself in critical condition on several occasions. Each time, doctors told her mother to be mentally prepared for her passing.

SMA is a genetic condition caused by changes or mutations in the survival motor neuron 1 (SMN1) gene, leading to a lack of SMN protein. Without this protein, patients experience muscle weakness and wasting, with symptoms such as breathing difficulties and loss of motor function.

SMA type 2 is called intermediate SMA because both the disease’s severity and its age of onset fall between the more severe forms (types 0 and 1) and less severe forms (types 3 and 4) of the condition. SMA type 2 is typically first diagnosed in children between 6 months and 2 years of age.

Life expectancy for SMA type 2 varies but is usually between 20 and 40 years. Although many people with SMA type 2 survive into early adulthood, respiratory complications often limit life expectancy.

In Singapore, there are about 40 to 60 patients with SMA as of last year, according to the Agency for Care Effectiveness (ACE).

Vivian recalled having to spend her 21^st birthday in the Intensive Care Unit (ICU) at the National University Hospital. The doctors and nurses celebrated the day by organising a party for her. 

Vivian celebrating her 21st birthday in hospital.

“While I was in the ICU, I told Jesus to give me more time on Earth. I still had so many things I wanted to do. I wanted to accompany my mother. I still wanted to see the world,” she said.

“Jesus granted my request. I don’t know why he has given me more time but I believe it’s because His assignment for me here is not done yet,” she added.

What is His current assignment for her? Salt&Light asked.

“I don’t know the details, but I know it’s to help others in one way or another. For instance, I hope sharing my story will inspire others to overcome their struggles in life,” Vivian explained.

“I don’t really pray and ask God to heal me completely so that I can walk. I believe He can do it but it also seems difficult. Maybe I can’t walk because this is God’s assignment for me … that I am meant to encourage others from my bed,” she added.

So far, Vivian has achieved her long-cherished dream of publishing a book that documents her life story – a remarkable feat given that she has never gone to school, and had largely taught herself to read and write in English and Chinese.

Vivian reading a baptismal booklet.

So far, the first print run of 1,500 books – titled Bed-ridden And Unstoppable – has been sold out since its publication in December 2021. It is currently being reprinted.

Along the way, she has also been open and willing to share her story with others on various platforms. Recently, a friend of hers did a video with her, with the intention of sharing it with secondary school students.

Vivian doing a recording from her bed.

In 2021, Vivian set up her own website, Vivian Bao Kah Liao (meaning “able to do everything” in Hokkien) to sell a wide range of products, including her own T-shirt designs, bags, cakes, cookies and other gifts.

Her customers usually contact her online or via text message. When she receives an order, she contacts her suppliers and has them to send the products to the customers directly.

Having a job that brings in steady income

Sales and income from her online website are sporadic. Vivian supports herself and her mother through steady monthly income that come from being employed in a job.

Two years ago, a neighbour of hers put her in touch with a job opportunity with ClickAcademy Asia, which runs sales and digital marketing courses.

Initially, she took on a part-time role to assist the company in performing certain administrative tasks, such as admitting participants into their Zoom classes. Later on, she became full-time with them, supporting them with their social media posts for a salary of close to S$1,000 a month.

“They interviewed me and knew about my condition. They also hire others who have other medical conditions,” said Vivian.

Vivian works from her bed by using technology that tracks her eye moments in order to help a company schedule its social media posts.

On a typical day, Vivian wakes up at 8am. After completing her work – uploading social media posts for the company that she works for – Vivian spends the rest of her day playing computer games or watching television till 8pm when she goes to bed.  

At times, she plays the audio tracks of healing prayers from YouTube on loop, soakingin an atmosphere of Scripture and prayers throughout the day.

On the weekend, she tunes in to the online services of the Novena Church as well as those of New Creation Church.

Vivian enjoys playing farming games on her computer in which she plants crops and rears chickens as such games are non-violent in nature.

Vivian no longer needs to go in and out of hospital as her condition has stabilised. A nurse visits her home every three months to change her nasogastric tube and a doctor checks in on her every half a year.

Last year, both Vivian and her mother had a scare when she had to be hospitalised in ICU after contracting Influenza A.

“I prayed and pleaded to God for Vivian not to die. I still wanted her to be with me,” said Ivy, her mother, who also came to the faith around the same time as Vivian.

Her prayer was answered. Vivian recovered the next day and could be discharged the following day, after spending 11 days in hospital.

Vivian’s mother, Ivy Yong, spent more than half of her life caregiving for her daughter all day long.

Vivian continues to experience His healing touch in her life.

“Last week, I had sinus for a few days. I was discussing with my home care nurse what medications I can take but before she could pass any to me, I was already better,” Vivian said.

“When I talk to Him, I know He hears, although sometimes He may not answer all my prayers immediately,” she told Salt&Light.

A few years ago, Vivian and her mother made their wills and set up their Lasting Power of Attorney. Should either of them pass on or lose their mental capacity, they have people they trust to make decisions for them.

“I am not scared of dying,” said Vivian. “God has His appointed time for me to go, but I hope my mother and I can pass on together so that we won’t have to worry about each other.”

She has appointed three legal guardians to make decisions on her behalf in the event if her mother dies before her.

All of them are doctors – professionals turned close friends – whom she had made over the decades because of her medical condition.

Looking back at her own life journey thus far, Vivian said to Salt&Light: “Remembering Jesus’ pain and death gives me strength in my own suffering. If God Himself is willing to suffer, who am I to reject suffering?

“If I had a normal life, I wouldn’t have been able to see how much He has been helping me all these years.

“So if you have a problem, tell it to God.”

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