Unlike most children his age, 16-month-old Vanden Lim cannot walk or talk. He laughs and cries so rarely that his Singaporean father, Mr Vandel Lim, 37, an accounts executive, takes a video each time he does.
Vanden suffers from post-infectious hydrocephalus with multiple brain cysts, as well as hearing impairment in both ears.
Hydrocephalus is a condition characterised by excessive accumulation of fluid in the brain. This is the result of an infection he suffered in infancy, and it has led to irreversible brain damage.
Dr David Low, head and consultant of Neurosurgical Service at KK Women's and Children's Hospital (KKH), and consultant, Department of Neurosurgery, National Neuroscience Institute, said Vanden will require long-term monitoring and management.
His mother, Indonesian Afita Nurjayanti, 32, who runs an online business, was 26 weeks pregnant and living in Batam when her water bag burst.
She went to Awal Bros Hospital Batam where she underwent a caesarean section and delivered Vanden, who weighed 900g.
The parents were relieved when Vanden survived the delivery, but that was just the beginning of his struggle. He had to remain in an incubator in the hospital for two months.
After the two months, Vanden barely gained weight and was just 1.2kg. His parents cannot bear to look back at pictures of him during that period.
Then they began to notice a bump forming on the right side of Vanden's head and raised their concerns with the Indonesian doctor, who dismissed it.
Despite that, Madam Afita said: "My heart told me something was wrong."
The family returned to Singapore and admitted Vanden to KKH, where Dr Low diagnosed his condition.
So far, Vanden has undergone a four-month stay at KKH and six operations and requires daily feeding through a nasojejunal tube and weekly physical therapy.
As Vanden holds a dependant pass and his Singaporean citizenship application is pending, he has not been eligible for many government subsidies. His medical fees are now almost $120,000.
Medical social workers have been giving his parents emotional support and helping to secure financial help from a charitable group, while the hospital has made an exception and extended the option of manageable payments in instalments.
Mr Lim has turned to crowdfunding site give.asia and has raised about $60,000.
With little support from family and friends, the couple appreciates the emotional support they have received from well-wishers, some of whom have visited their three-room flat in Ang Mo Kio.
Mr Lim said: "I have always been an independent person, but the situation is now financially and emotionally beyond me. I never imagined I would be in this position."
This article was first published on April 7, 2017.
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