“He needs help for every single movement, like a newborn baby except he is a full-grown man”: ALS robbed him of almost everything but God gave him something else more precious  

The room is quiet but for the soft, rhythmic whoosh of the ventilator. An electronic voice breaks the silence.

“Left foot, cover. Right eyebag.”

With gentle hands, Yeo Wanqi tugs at the blanket to make sure that it fully covers her husband’s nearly six-foot frame. Then she reaches out for a tiny scratcher to soothe the itch under his eye.

Toh Kok Peng, 41, communicates through a computer that allows him to use his eyes to control the keyboard, amyotrophic lateral sclerosis (ALS) having robbed him of his ability to walk, talk and eat. 

ALS is a motor neuron disorder that causes nerve cells in the brain and spinal cord to degenerate. This results in the progressive loss of muscle control. Eventually, even breathing becomes difficult.

Kok Peng (centre) with his sons who are now turning 10 and seven. They bond over watching videos together. Screengrab from video by Cornerstone Community Church Singapore.

So far, there is no cure for the disease. The average life span of a person with ALS is two to five years post diagnosis.

“We have crossed the five-year mark,” said Wanqi, 37, quietly.

Out of the blue

It was in April 2020, two weeks into the Circuit Breaker, that Kok Peng first told his wife that he thought something was amiss. 

“He said that when he tried to lift our son Oliver who was one year old, he felt he couldn’t do it. He also realised that his right arm had shrunken quite a bit,” Wanqi told Salt&Light.

Kok Peng with baby Oliver. It was while trying to lift his son that Kok Peng discovered a weakness in his right arm. That led to a visit to the GP who recommended consultations with specialists. All photos courtesy of the Tohs unless otherwise stated.

Consultations with specialists and a string of tests later, the diagnosis was confirmed on June 26 that year. It was ALS.

The diagnosis totally blindsided the couple because Kok Peng had always been athletic. During his National Service, he was part of the Naval Diving Unit, an elite special operations force. He worked out at the gym three times a week and participated in a half marathon every year.

Kok Peng (centre) had always been sporty.

“How he de-stresses is by running and being active. He keeps healthy. I’m the one who doesn’t exercise,” said Wanqi.

Kok Peng was also very young. He was just 36 and Wanqi was only 32.

Kok Peng and Wanqi met in university while he was pursuing a degree in Engineering and she in Math.

“We were in shock,” said Wanqi, tearing as she spoke.

“I was grieving the loss of a dream of a normal life, the loss of my partner although all these things hadn’t happened yet.

“We were full of hopes and dreams and plans for the future.”

The slide down

To cope, the couple decided to be “very rational about it”.

They looked to medication to manage the symptoms, exercises to maintain mobility, supplements to strengthen the body and the possibility of supernatural healing for a miracle.

Kok Peng started recording videos for their sons – then aged four and one – so they could remember him as a healthy father.

When he was first diagnosed with ALS, Kok Peng recorded a series of videos for his sons to tell them about himself and instruct them on how to behave in various scenarios.

In April 2021, Kok Peng co-founded MNDa Singapore, a support group for those who have a motor neuro disease, as well as for their caregivers. He would be awarded the Goh Chok Tong Enable Award (Promise) in 2024 for his contribution to this group.

Kok Peng with President Tharman Shanmugaratnam at the Goh Chok Tong Enable Awards ceremony in 2024.

But ALS would slowly chip away Kok Peng’s independence. First, he could not move his fingers; then, his right arm and eventually his left. His speech became slurred.  

In 2022, he fell face first at home, sustaining a concussion and chipping a tooth. After that, he stopped walking. By 2023, he could no longer speak.

That same year, the company in which Kok Peng worked underwent restructuring. He was let go.

Last year, no longer able to sit up on his own, Kok Peng started spending his days and nights in a hospital bed in his room.

Hearts slowly softening

But the loss that he felt most keenly was that of his job.

Wanqi told Salt&Light: “It was his identity.”

During that dark period, The Chosen, a series about the life of Jesus, was streaming on Netflix. Wanqi happened to be walking by one day when Kok Peng was watching the show. She sat to watch the episode with him.

“There was a scene of Little James who asked Jesus, ‘Why haven’t you healed me?’

“Jesus told him many people followed Him because they received healing. But Little James followed Jesus even though he was not healed. That took greater faith and he would be greatly used by God.

“During that moment, I said to Kok Peng: ‘Hey, that’s you.’”

It was a God-inspired utterance because, until then, neither Wanqi nor Kok Peng had thought about Christianity.

Wanqi had been to church and church camps in her youth, brought by her older sister’s tuition teacher. But that had been but a short season in her life. Kok Peng had always believed in another religion.

Kok Peng and Wanqi dated for five years before tying the knot on 12.12.12.

Tragedy, however, made them both more open to the Christian faith. As part of their search for a solution, Wanqi also tried praying to God.

“There is a Bible app on my phone. I’ve had it since I had the phone, I don’t know why. I opened it up one day and saw a guided prayer. So I would follow the guided prayer using the app.”

A God who never fails

Over the years, Kok Peng’s sister had tried sharing the Gospel with them. As Kok Peng’s condition worsened, she “felt prompted” to try again.

“She told him: ‘You are human and you fail. But God never fails.’”

That statement must have hit Kok Peng hard because, until then, he had been the one who had taken charge of things.  

“My husband is very capable. He’s the one who would do everything. He would tell me, ‘Don’t worry. You just sit there, I will do it all.’

“At home, he would do the housework, the cooking. He let me sleep in while he took the boys to the market. Plus, he was very dependable. He managed our finances; he did well at work,” Wanqi told Salt&Light.

Wanqi describes Kok Peng as a man who “always puts his family first”.

Not long after that conversation with his sister, Kok Peng accepted Jesus as his Lord and Saviour.

“His sister said: ‘He told me he said the Sinner’s Prayer.’ I was quite shocked because we didn’t talk about it.”

Wanqi was not so easily won over. She wanted to learn more about the Christian faith first. So a colleague compiled a series of online sermons for her.

“The very first sermon was called ‘Meet in the Middle’. And the Pastor talked about how the middle of a journey is too far from the beginning yet the end is not in sight.

“She said, ‘If you are in the middle of something, God is with you. God is not going to leave you alone.’

“I listened to the whole thing and at the end there was an altar call by the lady Pastor. So I said the Sinner’s Prayer with her.”

A baptism arranged by God

When her sister-in-law asked if they would like to be baptised, neither Wanqi nor Kok Peng saw a reason not to be. Wanqi was baptised in October of 2023. Kok Peng’s baptism took place the next month.

Wanqi being baptised in 2023.

Initially, the plan was for him to have a baptism by sprinkling, given his condition. But Wanqi and her sister-in-law both felt that he should experience baptism by immersion.

“Kok Peng was upset with me because he felt that me and his sister kept changing the plans.

“But I felt him being baptised by immersion was God’s plan. So I prayed: ‘God show him that this is Your plan, not my plan.’”

That day, Kok Peng’s friend from his army days came to visit and they got to talking about the impending baptism.

“His friend had always wanted to talk to him about Christianity and was very happy that Kok Peng had become a Christian,” Wanqi related.

“He said: ‘I will bring the mask and arrange for a couple of brothers to carry Kok Peng into the water.’ Kok Peng was very touched.”

Kok Peng being carried into the pool to be baptised a month after Wanqi was baptised.

Then they found out that the Pastor who was to baptise Kok Peng was the man’s cousin. Arrangements for the water baptism fell swiftly into place.

“When I saw him being baptised, I was emotional. I was just so happy to be there,” said Wanqi.

The faith that sustains

Life for the man who had once taken care of everything is now very different.

Wanqi explained: “He needs help for every single movement, like a newborn baby except he is a full-grown man. Even adjusting his toe, his finger, his feet, lifting his elbows.

“The last time we left the house with him was last August. We went for a medical appointment. He has not left the room in the last four months.”

To attend to him, Wanqi and the helper hired specially to care for him take turns to sleep in the room with him.

The couple have been together for almost 20 years. Wanqi told Salt&Light: “I have never thought of leaving him or putting him in a home because of his condition. I will take care of him.”

“I used to rely on my husband, on myself. Now I rely on God. In February last year, one of the helpers went home. I was doing all the nights and I was very exhausted,” she said. 

“One night, I went to the toilet and I told God: ‘Lord, I am so tired.’

“He said: ‘My good daughter, great things await you at the end of this journey. Keep abiding in Me, and I’ll keep abiding in you.’”

God has shown up for the family in other ways.

“I was looking for a new helper. God told me, ‘Don’t hire her. I will send you another one.’ Not an audible voice but I just know it’s not me because I don’t say such things to myself.

“I am very thankful to God. God provided for us this house that is near his parents’ place, the school for the boys which is a mission school, a good medical team that genuinely cares for Kok Peng. His doctor even gave me his personal number.

“Where can you find that? All these things we never asked God for, but He provided.”

Just before Kok Peng’s official diagnosis, Wanqi was offered a new position at work. When they had to move to be near to his parents, Wanqi realised how much the job was God’s providence because her workplace is now within walking distance of her home.  

In sickness and in health

ALS has impacted the Tohs’ marriage as well. Through the illness, Wanqi got to see a side of her husband she had never seen before.  

From the start of their relationship, Kok Peng had always been the one taking care of things, something Wanqi appreciates.

“Previously, I always saw him as the stable, fearless, strong man. But he is very sensitive, he gets hurt easily. He just tries to get past that because he was brought up that way – boys don’t cry, boys must be strong.”

Caring for the man who had cared for her throughout their nearly two decades together – five years of dating and 13 years of marriage – has been challenging.

“Sometimes he makes me feel I am directly responsible for his happiness. I cannot truly know what he is going through. Even my imagination is not good enough.

“When I accepted Christ, the first few things I prayed was: ‘Please change me totally up and down. Change me completely because I don’t seem to be able to control my emotions.

“’I get impatient at night when helping Kok Peng, I am always screaming, shouting at the boys, the helpers.’ Now it is a lot better than before.

Their sons, now in Primary 1 and Primary 4, run to Kok Peng the first thing they come home from school every day to share about their day with him.

“I miss the simple day-to-day kind of things. You go to work, you pick me up, we have dinner together, bring the kids out, go to the supermarket.”

Meanwhile, both Kok Peng and Wanqi walk the fine line between believing in God for healing and facing the brutality of the disease.

The Tohs on their last family holiday in Japan in 2022.

“Just a few weeks back, he said: ‘I want to die.’ But last Thursday, he had a coughing fit and couldn’t catch his breath. We didn’t know whether to send him to A&E or not.

“When he calmed down, he told God: ‘Please, let me see my children grow up.’

“He is suffering. At the same time, I believe God can do anything.”

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The post “He needs help for every single movement, like a newborn baby except he is a full-grown man”: ALS robbed him of almost everything but God gave him something else more precious   appeared first on Salt&Light.