SINGAPORE - When Christopher was four months old, a scratch and a prick from a blood test left his nose and finger bleeding for more than 30 hours.
After going through tests after tests in search of answers, his mother found out from the doctors that her baby inherited two faulty copies of the same gene, giving him bile acid synthesis disorder - a disease so rare it affects five out of a million children.
But the lessons his mother, The Straits Times education correspondent Amelia Teng, has learnt has proved nothing short of life-changing.
For Madam Low Meow Luan, a retired dishwasher, burning herself with joss sticks to kill the "insects" that would swarm and nip at her skin used to be an almost daily occurrence.
She suffers from delusional parasitosis, a rare condition where people are certain that their bodies are being invaded by insects. Doctors described this belief as "strong and unshakeable" and it is generally treated both as a skin and psychiatric condition.
Over the years, ST has featured unique medical cases that have challenged doctors here, and how patients and their loved ones have coped with the cards they have been dealt with.
Here are five cases.
'You will hear a drilling sound, just relax': Going through a 4-hour brain surgery awake
In 2017, Mr Oh Zhi Long discovered by accident that he had a brain tumour. Less than a week later, he lay awake in the operating theatre as surgeons sawed his skull open to remove a cancerous walnut-sized growth from his brain, in a procedure known as awake craniotomy.
He was kept conscious so that his surgeon and anaesthetist could talk to him to assess the effects of the surgery.
It was a delicate balancing act: Remove too little tissue and the tumour would most certainly come back. Take out too much, from the wrong spot, and Mr Oh could be rendered unable to speak, or paralysed for the rest of his life.
"You will hear a drilling sound, just relax," the doctor told Mr Oh, as the sound of metal crunching through bone fills the quiet of the operating theatre.
Why they had no regrets letting their daughter go
Mr Kelvin Chan and Ms Tay Shuhui faced a difficult choice as they watched their baby girl grow: to put her on life support or to pull the plug.
Kaelyn, their only child, was diagnosed with spinal muscular atrophy (Type 1) when she was four months old. The expected lifespan for people with that type of neuromuscular disease is usually less than two years.
Though Kaelyn was attached to five different machines - a ventilator, a suction pump, a machine to track her pulse and oxygen level, and oxygen tank and a milk pump - the little girl loved watching other children play at the playground.
But doctors told them they ultimately had to make a choice as her condition deteriorated.
They made their decision when a chest infection led to significant brain function loss for Kaelyn. She was three years old.
As they wiped her down with a wet cloth, her distraught parents dressed her in the clothes she had worn for Chinese New Year, and brought her back home for the final rest.
She would burn her skin to kill ‘insects’ that infested her body
Almost every day, numerous insects would swarm and nip at retiree Low Meow Luan's arms and feet, causing an intolerable itch. She slathered all sorts of ointments and salves, but relief was only temporary. So she clawed at her skin until it bled.
And when the bugs refused to go away, she lit joss sticks and pressed the burning tips onto her arms.
Except these insects were not actually real. Madam Low has delusional parasitosis, a rare condition where people are certain that their bodies are being invaded by insects, such as worms or flies.
14 years of trying and 3 miscarriages later, this couple finally have a baby
Ms Chen Li Jia has always loved and wanted kids. Like many other Singaporean newlyweds, she and her husband started trying for a child a few years after she married at the age of 27.
But no child came even as she turned 34, though checks with doctors found nothing wrong with either of them. She attempted IVF several times to no success, and eventually gave up on it.
In their 10th year of marriage, she finally became pregnant, but lost the baby within eight weeks. This was followed by two more miscarriages.
As she began to make peace that she might not become a mother, she found out she was pregnant the fourth time. Her son, Hansel - whose name means “the gracious gift of God” - was born on April 25, 2019.
A boy with a rare disease that costs $5,000 a month to treat
In their fourth year of marriage, ST correspondent Amelia Teng discovered she and her husband shared a bad copy of the same gene, when their son, Christopher, was diagnosed with bile acid synthesis disorder.
The disorder interferes with the production of bile acids and could lead to liver failure if left untreated. It is an extremely rare condition. According to doctors, it affects around five out of a million children.
While the diagnosis was daunting, what lied ahead shocked Christopher's parents: the medicine recommended by the hospital would cost at least $26,700 a month. Eventually, they were able to source a cheaper option from Australia that still costs a hefty $5,000 a month.
"I knew raising a child was not going to be easy, but I did not think these challenges would come so early in parenthood," said Ms Teng.
"But the joy he brings is also beyond what we expected."
In July 2019, the Rare Disease Fund was launched to provide Singaporeans with rare conditions financial aid for their life-saving medicines. Christopher was among the first few beneficiaries of the fund.
READ THE STORY OF ONE MOTHER’S SPECIAL BOY
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