“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.