At age 2, Amelia Ng lost her ability to crawl.
By age 5, she was unable to chew and swallow her food.
By 14, she couldn’t hold her gaze long enough to use the machine that helped her to tell her older sister “I love you”. Or to use her eyes to open up Google Assistant on the same machine to “sing” a happy birthday song to her doctor.
Amelia crawling when she was a year old.
Amelia using her gaze to select answers to maths questions via a machine two years ago. (Watch the video here.)
For the first 15 years of Amelia’s life, doctors couldn’t identify what she was suffering from.
Then a year ago, Amelia was the first person in Singapore to be diagnosed with Infantile Neuroaxonal Dystrophy (INAD). The rare neurological disorder that causes damage to the nervous system is progressive and degenerative, and its symptoms intensify over time.
Only about 150 children in the world have Infantile Neuroaxonal Dystrophy; most do not survive beyond age 10.
Only about 150 children in the world have INAD; most do not survive beyond age 10.
Amelia has outlived this prognosis by six years. She turned 16 in October 2022.
Still, Amelia’s family lives on the edge, never knowing when her last birthday will be. Every extended year of life is a miracle.
Today, Amelia cannot eat, speak or move on her own. She is hooked up to a ventilator 24/7 that keeps her alive. Even opening her eyes and taking a breath is a struggle.
“Amelia’s concern is always about others, not herself.”
But the bedridden teenager is still able to think, hope, communicate, pray and yes, show love to the people around her.
Amelia has a special way of communication, responding with blinks and swallows to “yes/no” questions.
Turning blue
Amelia has turned blue several times when her oxygen levels have dropped drastically, putting her at risk of brain damage – and even death.
Her most recent episode was in September when the family returned home from an outing to Suntec City.
As their father transferred a sleeping Amelia from the wheelchair to the bed he had customised for her, she awoke.
(Watch video, above, on how Dad Kin Nam, who runs his own engineering firm, shows his love for Amelia by customising equipment for her in resourceful ways.)
The alarm of her ventilator beeped furiously as her oxygen levels plunged dangerously from 90 to 80, 70, 60, 50, 40 to 30.
Amelia’s face and lips turned blue and her eyes opened wide in panic.
Chaos ensued.
Amelia’s mother prayed, as their crying helper shook Amelia.
Amelia’s face and lips turned blue and her eyes opened wide in panic.
Amelia’s sister, Amanda, just three years older, made a split-second judgement call to wait – instead of taking the greater risk of removing Amelia’s oxygen mask to manually resuscitate her.
Thankfully, after a few harrowing minutes, her sister’s oxygen levels started climbing back up.
“Moving Amelia is risky as her airway is like a thin straw. Any small movements would affect her oxygen levels,” explained Amanda.
(Watch Amanda’s novel way of cuddling and holding her sister, above.)
“Seeing” God
In 2022, Amelia “only” had three brushes with death.
Yet, it is during these moments that Amelia says she “sees” God.
Amanda “chats” with her sister by asking questions and looking out for her responses. Amanda is currently studying for a degree in psychology at a university.
“You can’t see His face or what He is wearing?” her sister asks.
Eyes flicker.
“But you can feel or sense Him?”
Eyes flicker.
Amelia’s plight – and her faith – have prompted her mother and unbelieving father to go back to church.
These intense moments are when Amelia feels God’s presence the most.
In the wake of such moments, Amelia’s mother – who stepped away from the faith – and her unbelieving father have gone back to church. They have also encouraged her sister to pray more.
Having felt God’s presence amid her struggles with death, it’s no surprise that Amelia’s favourite Bible verse is Isaiah 43:2:
When you pass through the waters,
I will be with you;
and when you pass through the rivers,
they will not sweep over you.
When you walk through the fire,
you will not be burned;
the flames will not set you ablaze.
Was she angry with us?
After Amelia’s latest emergency, Wendy Loh, Amelia’s mother, confided in Amelia’s palliative nurse, Poh Ya Nee, from HCA Hospice.
Wendy was worried that Amelia was angry with the family for seemingly “doing nothing” as she fought to live.
Home care palliative nurse, Ya Nee, checks on Amelia’s lungs by listening to her breathe.
But when Ya Nee visited Amelia, she sensed that Amelia really wanted to tell her something.
She discerned that Amelia had mixed feelings over her traumatic, near-death experience – and she wanted her family and their helper to know that she wasn’t angry with any of them.
Domestic helper, Weni, has been helping to care for Amelia for the last seven years. She had not been back home to Indonesia to see her husband for four-and-a-half years because of Covid. Yet she delayed her trip home by a year to be present for Amelia’s milestone 16th birthday.
Despite almost losing her own life, Amelia was still thinking of others,
“This is how loving and thoughtful Amelia is,” said Ya Nee. “Her concern is always about others, not herself.”
On another occasion, Amelia communicated to Ya Nee that she isn’t afraid of losing her life.
But she is worried about her family, particularly how her mum will cope after she passes on.
Amelia on a cable car ride with her mother in 2021.
“She seemed not to be afraid of her own physical suffering or death, but was worried about what it would mean for her mum,” said Ya Nee.
At Amelia’s 16th birthday party, Wendy shared:
“Amelia truly demonstrates who Jesus is. She loves unconditionally, without asking for anything in return.
“It is her faith that has brought our family back to Christ.”
Holding onto hope
Over the years, the Ng family has seen Amelia experience intense loss after loss.
Yet, against the odds, Amelia’s life is also coloured with moments of joy, love, and most of all, hope.
Guests at Amelia’s 16th birthday party included Kexuan and her parents. Kexuan, 3, was recently diagnosed with the same rare condition as Amelia.
Sister Amanda asks Amelia, “So why do you still have hope, despite living with a fatal disease?” (See video below)
Amelia indicates – through blinks and swallows – that her hope lies in Jesus one day having a cure for INAD.
She becomes emotional and sighs at the mention of a cure. Her oximeter starts beeping, indicating her oxygen level is dropping.
“I think it’s because she knows she may never see a cure in her lifetime,” Amanda says.
Currently, there is no cure or treatment that can stop the progress of INAD. As it is rare, there is little funding for the research needed to find a cure.
That is why the Ng family have urged family and friends to donate to the INADcure Foundation – a non-profit organisation that does research in gene replacement therapy – in lieu of presents for Amelia’s 16th birthday.
Amelia is able to love her family, despite being severely disabled. “Amelia will ration her energy and try to be awake for different pockets of time for each of us, such as when Dad or Amanda (pictured) returns home, because she wants to spend time with each of us,” says Mum Wendy.
Meanwhile, hope to Amelia’s family means holding on to their trust in God. They believe He will give Amelia the strength she needs for her time on earth, also having faith that they will all be reunited in heaven one day.
Hope for Ya Nee, Amelia’s palliative care nurse, is seeing Amelia’s enthusiasm at living out her remaining days.
Palliative care nurse Ya Nee gives Amelia a manicure during her 16th birthday party.
“Amelia is full of hope. She always looks forward to doing new things with her family.
“Whether it is going to a new place or doing a new type of art and craft, there are a lot of things that she wants to do,” says Ya Nee.
Amelia’s eyes opened wide as she took in the sunset from the North Star cruise’s elevated observation capsule in 2022. “I challenged myself to get out of my comfort zone so that the family can do new things together,” said Mum Wendy.
Still on Amelia’s to-do list: Going for another cruise, seeing more family and friends come to know Christ, and writing a book.
Like a butterfly
For her 16th birthday, Amelia specifically requested for a butterfly-themed party.
Earlier that week, a friend had given Amelia a pupa of a lime butterfly that was expected to emerge a few days later.
Amanda, her sister, asked: “Why do you like the butterfly, Amelia? Because it represents freedom?”
No response.
“Because it’s pretty?”
No response.
Amelia peering at the pupa inside a bottle. The caterpillar had pupated on a spoon.
“Because it symbolises new life?”
Flutters eyes. (Yes)
In the same way, Amelia knows that her family, especially her mother, may need more time before she too, flies off.
Before a caterpillar can become a butterfly, it has to go through a pupa phase where a great deal of transformation happens beneath the surface.
During this time, most of the tissues and cells that make up the larva are broken down inside the pupa, and they are rebuilt into an adult butterfly.
The pupa which was gifted to Amelia during the week of her butterfly-themed party.
As the butterfly approaches its moment of freedom, its wings push and push against the inside of the pupa.
The lime butterfly emerging from the chrysalis.
The struggle is necessary. This pushing motion strengthens the butterfly’s wings so that when it is ready to emerge, it is able to fly.
Amelia’s struggles remind her family of a Bible verse: “Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day.” (2 Corinthians 4:16)
On a bright Monday morning, Amelia’s lime butterfly finally squeezes out of its chrysalis. It flaps its black, white and yellow wings for the first time.
Amelia gazing at the butterfly.
Amelia instantly falls in love with this new life.
She watches as family members release her butterfly.
Moments before the butterfly takes flight from the balcony.
There is a lingering reluctance at the bittersweet parting. But Amelia’s eyes open wide as she watches the butterfly take flight from the balcony towards the sea.
In the same way, Amelia knows that her family, especially her mother, may need more time before she too, flies off.
And so, she fights on to live another day.
This story is an excerpt from a series that first appeared in Salt&Light.
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