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Diagnosed at 14: Life with Pompe Disease

by | 12 October 2017, 5:26 PM

“You’re turning 24? Me too!”

I’d only been speaking with Emily Ho for a whole 5 minutes, yet we had already made a connection. Both of us were born in the same year and we’d established that we were better listeners than talkers. We were similar in many ways, except she was a patient and I was a visitor.

Emily is 1 of 4 known patients in Singapore who suffer from a rare genetic disorder called Pompe Disease. This disease debilitates muscles and affects their ability to function normally.

Most people who have this condition eventually die of respiratory failure because their diaphragm gradually becomes too weak to support breathing. For Emily, her leg muscles have already become so feeble that simple tasks like squatting and sitting are difficult for her. She falls easily and can’t get up without help.

“In the past when I wasn’t using a crutch, people wouldn’t come to my aid immediately when I fell down because I look so normal,” she laughed. “I’d be on the ground until someone offered to help me up.”

Emily had rejected using a wheelchair for many years, but the past 2 years have gotten increasingly tedious for her. She now uses an elbow crutch to help her get around.

Despite her condition, Emily has a very calm and pleasing disposition. There’s a perpetual smile on her face. If not for the elbow crutch, you wouldn’t have known this cheery girl has such a serious medical condition.

Sitting next to someone my age who has to go through bi-weekly treatments for a potentially fatal disease, yet remains so positive about life, was inspiring and sobering at the same time.

COMFORTED BY COMMUNITY

“I felt suffocated and angry because I was very lost in my situation,” she told me, “I didn’t know what would change and how I would need to adapt so I couldn’t voice out for help.”

Because she was unable to express her needs, Emily became very moody. However, her church friends were patient and encouraged her to open up.

They encouraged Emily to keep working at what she was talented at and helped her to discover her gifts in graphic design and typography while she was still struggling to find a platform to serve God.

They would opt for handicap-friendly places near Emily’s house when planning gatherings so it’d be easier for her. These friends carry Emily every time she needs to get up from her chair.

“I still do throw my tantrums but they accept me for who I am. I feel God’s love through how willing they are to help me, how understanding, sensitive and accommodating they are.”

Emily not only receives support from her church community but also her newly established support group.

Because of the rarity of the disease, Emily hadn’t known about other patients in Singapore for the past 10 years since she was diagnosed. But an opportunity opened up when The New Paper interviewed her after she received the Hero Patient award last year. The Hero Patient award is presented by the Eastern Health Alliance to exceptional staff, patients and caregivers.

Encouraged by Emily’s openness, three other Pompe Disease patients in Singapore reached out to her and they all connected for the first time.

“It’s good to have a support group,” Emily told me, “It helps to identify with people who struggle with the same issues as I do.”

“This is why opening up is important – so that you don’t go through this alone and somebody can walk this journey with you.”

FUELED BY FAITH

Witnessing Emily’s spirit of faithfulness, I wondered how she reconciled her present situation with God.

“When I was diagnosed with Pompe Disease, my aunt offered to pray for me and asked if I wanted to be healed,” she explained, “I did, and I accepted Christ.”

But the healing never came. Hearing this made me question: If Emily came to know Christ because she wanted healing, why did she hang on to her faith despite not receiving what she wanted?

She shook her head and laughed as I voiced this out. “There was once after I went back to church, I had a fall right outside the church building. I cried really badly, not knowing exactly why. I just felt a storm raging in me.

“But as I was crying, I felt God comforting me. He told me that when I’m weak, He’s my strength. At that moment I understood while the physical healing had not come – God had healed my heart. He cured me of my heartaches and sadness and I was finally able to move on.”

There have been other miracles since then. The same year she was diagnosed with Pompe Disease, SBS kickstarted the wheelchair-accessible bus (WAB) services. One of the many features that were newly introduced through this scheme was the replacement of steps with ramps. This made public transport handicap-friendly.

And the first bus service that was launched? It goes directly to her school. That made life much easier for her. Previously, she was very reluctant to attend school as it took a lot of effort just to get up the bus.

HANGING ONTO HOPE

Pompe Disease is incurable. One can only go for treatments to slow down the deterioration of the muscles, but the treatment requires bi-weekly appointments and each session costs about $27,000. This all amounts to a yearly medical expenditure of nearly $500,000.

“I wasn’t keen on treatment initially. I intended to live as I’d always did because I couldn’t afford it.”

That’s until she was miraculously provided with a medical sponsorship. However, it is ending this year. If the renewal process falls through, she will have no choice but to stop the treatment.

Emily’s face is somehow still smiling as she shares this with me. She asks me to pray with her, that her medical sponsorship will come through again. “But I know that no matter what happens in the future, God is with me and He will always help me.”

I thought about what she said. Her response to trust God in the face of adversity demonstrated a profound truth: God does answer prayers. Perhaps not in the way we expected it, but He has his own ways and purposes.


If you would like to reach out to Emily or make a donation, please visit her Give.Asia page. You can also view her artwork on her Instagram.

/ siqi@thir.st

Siqi loves to eat. Except for peas, egg yolk, cucumbers, livers, intestines. Among others. She also happens to be a writer.

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It takes a miracle to feed a whole village – and we did

by Kaiting Teo | 11 December 2017, 4:44 PM

There’s a good chance you’ve heard of the story about how God multiplied five loaves and two fish to feed 5000 people (John 6:1-14).

If you haven’t, it goes something like this: Thousands of people had gathered to listen to Jesus and be healed from their sicknesses, and after a long day out in the hills, Jesus asks His disciples how they were going to feed them.

The question is rhetorical because He already has a plan, but the disciples respond with their own logic, telling Him there’s no way to get food out in the countryside, and even if they did it’ll cost them thousands of dollars, which they don’t have.

Jesus persists and tells them they were to feed the people anyway, and one of them brings to Him a little boy who was willing to offer Jesus His packed lunch of five barley loaves and two fish. Jesus then prayed over the bread and gave it to His disciples to distribute. They not only feed the 5000 people present, they have 12 baskets leftover after the world’s greatest picnic ends!

I wouldn’t blame you if you’re wondering if that actually happened. But today I have no doubt God’s power, because I’ve experienced that amazing scene myself.

Last year, I took part in a school trip to Cambodia. On our last day there, we had a “cultural night” where we cooked for the villagers and celebrated with them.

As the time for the big dinner drew near, everyone was busy cooking and getting the dining hall ready. Things weren’t off to a great start as it was raining very heavily and there was a chance that our programme had to be cancelled.

Anxiety built even further when twice the number of families than we’d prepared food for showed up – almost 200 families. We were certain there wouldn’t be enough to feed everyone.

However, God always makes a way out.

Serve My people and I will provide for you in abundance. I was sure I heard Him speak to my worried heart, but I wasn’t sure what He meant. Joining my team as we distributed the food to them, I felt faith arise that with the Lord, we’d have more than enough to give … somehow.

I wanted to show them God’s love, even if what I had to offer was so little.

As I gave out bowl after bowl of chicken curry, I made it a point to smile and pat their shoulder, believing even the smallest gestures of love would bless them. I wanted to show them God’s love, even if what I had to offer was so little.

You wouldn’t believe it – and we barely could either – but at the end of the night, there were so much leftover food that there was enough to feed my whole team, our lecturers and every household in that village.

The rain didn’t stop the whole evening, but as the festivities and laughter swelled in the small community hall, I sensed the presence of the Lord moving in that place, and my heart was so full. I never forgot what I learnt about the God of the so-much-more through that simple dinner.

The same God who multiplied the five loaves and two fish is still providing for us in abundance today – we simply have to place our faith in Him.


This is a submission from a participant of our Christmas Gift Exchange. From now till the end of December 2017, we are giving away a limited edition Thir.st Tumbler in exchange for every story on the Christmas themes of love, joy, peace, hope and giving. Click here to find out more.

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An arts festival with purpose: Make room for the displaced this Christmas

by Jonathan Cho | 11 December 2017, 1:53 PM

Places are significant. Whether it be an actual physical space like our homes, a seat at the dinner table, or something less tangible like having a place in someone’s heart, we all appreciate it when people make space or hold a place for us.

“Having a place” reminds us that we belong, that we are of value. Yet the reality for some is that by circumstance, they have little or no reason to believe that they carry such inherent worth or significance.

I’m reminded of the people groups that many of us have come to expect to read about in the news – those who float about at sea in desperate hope of finding a place to take refuge, or those who get pushed about across countries/regions with no place they really belong.

Closer to home, my heart turns to the displaced and the destitute, who often find themselves outcast in society, with no place to call their own and nowhere they can really feel welcomed.

Jesus entered a world that had no place for Him, and His first sight of it was dark, dirty and definitely not welcoming.

That experience of exclusion is something that many of us can identify with on different levels and for a variety of reasons. When we experience this alienation from the community around us, that unshakeable sense of being inconsequential and non-existent – it can feel like we count for nothing at all.

In Luke 2, we read the story of a person who had every reason to feel inconsequential and non-existent, even though that could not have been further from the truth.

In the story of Jesus’ birth, we learn that when He first entered our world, there was no room at all for Him: “And [Mary] gave birth to her firstborn son [Jesus] and wrapped him in swaddling cloths and laid him in a manger, because there was no place for them in the inn” (Luke 2:7).

Jesus entered a world that had no place for Him, and His first sight of it was grim to say the least – dark, dirty and definitely not welcoming.

The darling of Heaven, the very Son of God, left His place in the heavens to enter a world which had no room for Him – the brutal reality and ordinary pain of the human condition. God the Father too, was also willing to let His only Son be born into these conditions, almost as if to tell us that He doesn’t mind the brokenness of our fallen nature and lack of room that we have for Him.

The beauty and good news of the Christmas story is that someone significant willingly gave up His heavenly place and lived as a man who had “no place to lay His head”. 

Whether it be a physical manger or the equally dark and dirty conditions of our hearts, it seems to me that all Jesus wanted was to enter into our lives and to have a relationship with us. Places are significant to Him, and however small the room or the place in our lives we’re willing to give, He will take it – because that’s what He came for.

The beauty and good news of the Christmas story is that someone significant willingly gave up His heavenly place and lived as a man who had “no place to lay His head”. Not only that – He also took our place and died for our sins, so that by this sacrifice and our belief in Him, He could give us a new place in His Father’s house.

“And if I go and prepare a place for you, I will come again and will take you to myself, that where I am you may be also.” (John 14:3)

He just wants to be with us.

This Advent season, I am reminded of the sacrificial, unconditional love of my Saviour and His desire to lift up a people who often find themselves feeling insignificant. He gave us dignity and worth – He gave a place in His family, although we did not deserve it. Would we do the same for others?

I have resolved to take on His example: An example of place-making for the people around me who may feel as if they have no place in this world, whether it be the vulnerable in the community, family, friends or just anyone who needs a place to call home – anyone who feels like an inconsequential, insignificant placeholder.

The Placeholders team preparing a floor mural for the festival.

In doing so, I have found my place in a community of people working to do just that by putting together an arts festival called Placeholders, which will be held at the abandoned building over at 10 La Salle Street.

Using the convicting nature of art to explore and surface issues of displacement amongst the poor and needy in Singapore, festival goers will also discover how a simple act of making room for someone can possibly change a life.

Jesus gave his place in heaven to take our place on the Cross, so as to create a place for us in His Kingdom. By the life He lived, we are always reminded that we each have inherent value and significance in His eyes – and that we too should see those around us through His.


Placeholders is an arts festival that seeks to engage the community to reflect on what it means to make place for marginalised individuals and families alike, particularly during the Christmas season. All are welcome!

Date: 16 & 17 December 2017 (Saturday and Sunday)
Address: 4 & 10 La Salle Street
Time: 10am-9pm

For more information, please visit their Facebook page and Instagram page.

The Festival is partnership between Bethesda Frankel Estate Church and New Hope Community Services, a voluntary welfare organisation working with displaced families in Singapore. All proceeds raised from the event will go towards the Kampong Siglap Lifeskills Training & Retreat Centre, an initiative by New Hope Community Services which provides shelter for these displaced families.

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Not just a passer-by: Taking time for tissue paper sellers

by Lemuel Teo | 1 December 2017, 5:58 PM

Having walked the same route from the MRT station to the bus interchange countless times, I knew the drill: Avoid colliding into others, stay glued to my smartphone, flash a polite but firm smile to insurance agents.

The commute was quicker rushing this way, and it was also easier to ignore the tissue paper sellers and buskers by the wayside. I felt like they were an impediment to my journey.

Honestly … I found them annoying.

Three months ago, after a long day spent in the city, I noticed a man selling packets of tissue paper along my usual route. I’d never seen him before and thought of blessing him with a few dollars.

But weary, I was reluctant to slow down for him. Immediately, I felt the Spirit asking me, “Would you stop for him?”

“Not today, Lord,” I said in my heart as I walked past the man.

The Spirit tugged at my heart. I remembered then how I committed to not grieving Him, and how I wanted to obey His every prompting.

Turning around, I walked over to the man and asked if he’d eaten. “你好,吃饱了吗?”

I introduced myself and enquired about his well-being. He shared that he could not find a proper job because of his physical disability.

I felt compassion growing in my heart, and I told him that he is valuable in God’s eyes. Though he had seen many walk past him and ignore him, I told him God loves and cares for him. By grace, I then led him in a prayer of re-dedication to Jesus Christ and invited him to my home church.

That was the start of our unlikely friendship.

In time, I made friends with another lady who was also selling tissue paper in the same area. Despite our significant age difference, our conversations were meaningful and comfortable. We talked about everything from religion, to her family, even her health conditions.

I always felt like I was speaking to a friend.

I began to look forward to these simple conversations in the evenings as I travelled home. I knew my new friends’ personal stories and the reasons behind their livelihood. These conversations were no longer impersonal small talk – we would actually catch up on each other’s lives.

However, after two months of consistently seeking them out and chatting with them, I somehow developed compassion fatigue.

I ran out of patience and love. Previously, I wouldn’t flinch at spending $10 or even 15 minutes of my time with them. But suddenly, I was tired and unwilling to share my time and money with them.

The initial zeal of loving my neighbour gave way to weariness. I elevated my personal convenience above loving others and obeying the Spirit.

Soon, I found myself taking a detour whenever I walked between the MRT station and bus interchange, just so that I wouldn’t bump into them and need to stop for a simple conversation.

I was back to the apathy of square one.

A fortnight ago, the Spirit prompted me to read John 4. In that chapter, John records Jesus’ journey from Jerusalem towards Galilee.

Taking the most direct path would lead him through Samaria: An area occupied by the Samaritans who were despised by the Jews for their half-Jew, half-Gentile ethnicity.

They were marginalised for their mixed race and pagan religion. So Jews commonly avoided Samaria, taking a detour along the Jordan River in the east.

But Jesus “had to” (John 4:4) pass through Samaria. There, He stopped for one Samaritan woman at a well, promising her living water. Consequently, her entire town was brought to salvation (John 4:1–45).

Even in His travels, Jesus submitted to the Spirit’s leading. Though tradition meant it wasn’t necessary to pass through Samaria, Jesus was in tune with the Spirit, and knew He had to travel through a place normally avoided by others.

In the original Greek, “had to” indicates a necessity arising from a command. For Jesus, obeying the Spirit was the most important thing. Societal pressures or personal comforts were not part of His considerations.

Jesus’ compassionate commute was a stark contrast to my recent approach with the tissue paper sellers. I was deeply convicted that I had a selfish and loveless heart for others.

Jesus told His disciples, “My food is to do the will of him who sent me and to accomplish his work.” (John 4:34). He lived with the sole intention of accomplishing God’s purpose. To this end, Jesus was always in close fellowship with the Father (John 17:21), doing exactly what the Father showed Him.

If we are to imitate Christ, we need to first experience God’s love. We only love because He first loved us (1 John 4:19). It is only out of a loving relationship with God that we are able to love other people.

In other words, without regular and personal encounters with the love of Jesus, it is impossible to conjure up genuine love for those by the wayside.

It is only out of a loving relationship with God that we are able to love other people.

Meditating on John 4, I was moved by Jesus’ intentionality in loving the Samaritan woman. I endeavoured to emulate his pattern and told God, “Help me to love others like you would, Lord.”

In time, I started walking my normal route again – purposefully stopping for my friends.

Who is God telling you to stop for? As we go about our daily business, let’s remain mindful of those by the wayside: Tissue sellers, office colleagues or even next-door neighbours.

Your one conversation could possibly be the only godly one they have with anyone the entire day – perhaps even their whole life.


This article was first published on Selah.sg and was republished with permission.

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Running for HOME: The race for social justice for domestic workers

by Joanne Ong | 1 December 2017, 4:58 PM

It all started after graduation this year, when my good friend Isabel and I decided to courageously fly ourselves to Tiruchirappalli, India, to visit our migrant worker friends back in their own villages.

We had forged a friendship with our migrant worker friends while they were working in Singapore for the past 7 to 10 years. We enjoyed this special friendship with them, and often exchanged jokes and shared pictures of our families with one another.

However, due to unfortunate circumstances regarding their work permits, they were sent back to India earlier this year without our knowledge. We lost contact and were not content with the abrupt end of our friendship. Fortunately, we retrieved their addresses and, hence, the grad trip of our lives!

To our delight, Isabel and I not only reconnected with our migrant worker friends miles from Singapore, but were also introduced to their village and family members. We stayed with them, milked their cows, visited their plantations and visited cultural sites together.

Witnessing and experiencing their lives back in their own village reminded us once again that migrant workers have their own stories to tell. They are more than a statistic; their lives are more valuable than our nation tends to acknowledge.

Meeting with their spouses, children, and even grandparents opened up our eyes to the incredible burdens these workers carry to support their family by earning a living in a foreign country.

Isabel and I have always shared a passion for justice and the marginalised, and upon returning back from India, hearts gripped with the plight of migrant workers’ lives and rights, we got connected with HOME.

HOME stands for the Humanitarian Organisation for Migration Economics, a non-profit organisation dedicated to assisting and advocating for foreign workers in Singapore. We’ve enjoyed building relationships with the lovely HOME staff, and have had various visits to their help desks, shelter for abused domestic workers and training academy that empowers them with skills.

Some may say it’s time-consuming to build relationships with migrant workers and domestic workers, and at other times, it also means offering practical financial assistance for them. These are the questions people may have: Is it really worth it? Why do we do what we do?

As believers of Christ, we recognise that social justice is the very heart and character of God (Deuteronomy 15:11, Psalm 146:7-9, Isaiah 58:3-7). Since it is the very nature of God to uphold the poor and vulnerable, likewise God’s people must pursue the same. Loving and responding to the needs of the marginalised thus is an outflow of the love and grace God has first shown us.

Photo taken from the HOME website

Isabel and I have learnt so much from the HOME team and their work, and we’ve recently decided to raise funds to support what they do.

Coming December 3, 2017, I will be running the Standard Chartered full marathon with two beautiful and strong domestic workers from the Philippines, Nancy and Jannah, to raise funds for HOME under a personal initiative we call Run for HOME. I’ve always enjoyed running, but this time round, I’m excited to be running for a cause dear to my heart.

Run for HOME carries a meaning greater than my interest for running; it also represents our shared vision and passion for justice. I’m excited not just to run for, but to run with the domestic workers for this cause – which symbolises my commitment to being a part of their journey.

I believe the physically and mentally exhausting distance of 42.195km would also allow me to identify with the challenges that migrant workers and domestic workers face, although what I will experience is minute compared to their real, everyday struggles.

Hope for the many women HOME has helped looks like this: Stepping out of a place of abuse into a place of warmth and refuge.

The one image that will keep me running to the finishing line is the memory of meeting a group of Punjabi women at the HOME shelter.

“Last time not good, but now very good,” said a Punjabi lady who’d been abused by her employer, her face brightening up as she shared how the shelter had been a safe place for her.

Hope for this woman and the many women HOME has helped looks like this: Stepping out of a place of abuse into a place of warmth and refuge. To see them holding onto hope again in their lives drives me to keep running – not just in this marathon – but in the race for social justice for all.

Open your mouth for the mute, for the rights of all who are destitute. Open your mouth, judge righteously, defend the rights of the poor and needy.” (Proverbs 31:8-9)


Joanne is a social worker based in Singapore, having been exposed to the exploitation and injustice faced by the migrant workers as an undergraduate in university. Other social concerns her heart is burdened for include poverty and community development.

HOME does not receive funding from the government and relies solely on donors. Their shelter for abused domestic workers alone takes $350,000 to run annually. Donate to Run for HOME and contribute to a culture of justice in Singapore, where all lives are seen with equal dignity and worth. To find out more about HOME and volunteering opportunities, visit their website here.

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FOPx: Surrender ushers in the supernatural, Ben Fitzgerald urges youth

by Thir.st | 23 November 2017, 5:19 PM

“When God tells you to do something, He’s not asking you to figure out how to do it. It’s up to you to obey. It’s up to God to do it.”

Ben Fitzgerald, leader of Awakening Europe and GODfest Ministries, opened this year’s FOPx Conference – themed “Surrender” – with a simple question: Whose wisdom are we going to live by?

“As a Christian, you’re supposed to be filled with God and His wisdom. It may look irrational to you, but God is not irrational – He is trans-rational. His thoughts transcend your thoughts.

“We only have to surrender and say yes.”

Referring to John the Baptist, Pastor Ben, who used to serve at Bethel Church, Redding, exhorted the 800 young participants of the youth conference to faithfully obey as God calls, to prepare the way of the Lord.

“If you rely on your ability to do something, nothing supernatural will ever happen.

“John had nothing naturally in him that anyone should have listened to him, but he had a yes in his spirit. He had zero – zero resources, zero qualifications – but he was close to the One.

“He simply bent his knee and allowed the Son of God to step across into His destiny. And you and I have the same call on our lives.”

He reiterated his point on this importance of submitting our humanly wisdom to the wisdom of God with the example of King David, who continually turned to God to ask Him how He wanted things done.

And because he always consulted in God’s rationality above his own, King David was able to surrender himself wholly and walk in God’s way throughout his years of kingship.

If you rely on your ability to do something, nothing supernatural will ever happen.

Pastor Ben ended his sermon with a personal testimony of putting God’s wisdom above his own. During a trip to France, where he was due to speak in a local Church, he encountered a woman in a wheelchair on his way to service.

It was just 5 minutes till the service started and he had just enough time to walk to the Church, but something stirred in his spirit to stop and pray for the woman’s healing.

“I heard God tell me that He wanted to heal this woman, but I really didn’t want to be late for my speaking appointment – I almost wanted to tell Him to go ahead and do it Himself!” He said to a laughing crowd.

“But I knew I could either go with my own rational wisdom to not be late, or surrender in obedience to what He was putting on my heart. So I stopped and approached her.”

Although the woman spoke no English, her husband who was pushing her wheelchair did. His wife was suffering from a debilitating muscular disease and was no longer mobile. He allowed Pastor Ben to pray for her, but did not offer to translate.

I knew I could either go with my own rational wisdom or surrender in obedience to what He was putting on my heart.

Pastor Ben went on to share that as he prayed, the woman began to writhe, but as he persisted in prayer, she suddenly went limp, as though something had left her body.

Speaking in rapid French to her husband, he explained that she was confounded by how the chronic pain in her back and legs had disappeared. She could move again! Overjoyed, she leapt up and embraced Pastor Ben.

That night, as the couple attended the service Pastor Ben was preaching at, they received Jesus Christ as their Lord and Saviour. What’s more, the woman prayed for another lady in the congregation who was suffering from the same disease, and she too was healed on the spot.

“Imagine if I’d obeyed my watch instead of the watch of the Lord,” Pastor Ben said. “Your rationality should never get in the way of the wisdom of God.

“Whose wisdom are you going to live by?”


FOPx will be taking place this week from Thursday to Saturday, November 23-25, 2017. It will be held at Trinity Christian Centre (Days 1 and 2) and Bethesda Cathedral (Day 3). Tickets are priced at $40 per person and you can get them here. Night sessions are free and open to all!

Speakers include Lou Engle (co-founder of TheCall), Ben Fitzgerald (Director of Godfest Ministries) and various local Senior Pastors. 

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Article list

Diagnosed at 14: Life with Pompe Disease

It takes a miracle to feed a whole village – and we did

An arts festival with purpose: Make room for the displaced this Christmas

Not just a passer-by: Taking time for tissue paper sellers

Running for HOME: The race for social justice for domestic workers

FOPx: Surrender ushers in the supernatural, Ben Fitzgerald urges youth