PETALING JAYA: On Dec 1, 1997, Dominic Damian was driving when a radio show cut into his thoughts.
The voice was A. Radha Krishnan, known as “The Black Stallion”. It was World Aids Day. He spoke about an infant girl.
She had been found under a bus in Alor Setar months earlier. Abandoned, wrapped in a plastic shopping bag, malnourished.
When the bus engine roared, people nearby heard a child’s piercing cry. A policeman pulled her out to safety. She was about five months old.
Doctors later noticed scars on her head, a silent indication that she might have been physically abused before being dumped.
At the Penang General Hospital, two families had already turned away from her. The reason was stark: she was HIV positive.
Music teachers Damian, then 42, and his wife Jacinta Samuel from Jalan Ipoh in Kuala Lumpur had little money, but when they heard her story they decided to take her.
They trusted the assurance that she would receive free medical treatment for life.
They named her Amanda Mei Chu. Her Chinese name means “Pretty Pearl”.
A family built on choice
She was the third among five children adopted over the years.
Each had been abandoned. They shared nothing but need. What they found was love.
Music became their language. The twin sisters, 31, teach piano, violin, flute and voice. Their brother, 24, teaches guitar. The youngest, 15, is focused on her schooling.
But Amanda, who came to them at 19 months, carried the heaviest burden.
“Every child is a gift of life. Each child must be given a chance. We as adults must protect them. We cannot do any less. We owe them,” said Damian.
A baby no one would take
The Community AIDS Service Penang, which helped in Amanda’s placement, repeated the assurance that she would get lifelong treatment.
She would have a birth certificate. She would be cared for as a citizen. For years, the promise held.
The Kuala Lumpur Hospital treated her without question. She carried a blue hospital card marked warganegara (citizen).
But at the end of 2017, the hospital told Damian that Amanda was not Malaysian.
Her treatment was no longer free. The promise they had built their lives on was gone.
A life now in pain
Amanda is now 29 years old. She weighs just 23kg. Less than the weight of a healthy 10-year-old. Her height is under 120cm.
“She is a bag of bones,” her father said.
Since January this year, she has grown weaker. Her mouth is filled with ulcers. Her lips bleed. Eating is torture. Some days, she must be force-fed.
Every night, Damian, now 70, cleans her mouth inside and out. It is the only relief he can give.
“I cannot give her the treatment she needs. One, it is the cost. Two, it is not available everywhere. Only the government hospitals can provide it.”
A father’s heartbreak
During the interview, Damian broke down.
“She is Malaysian. Everything is there to say that she is a citizen.
“Please make this exception. Please do the right thing. Do not let her down. She must know this is a nation that cares for her.”
HIV treatment is not ruinously expensive. Malaysia already runs one of the best HIV programmes in the region.
So, why deny it to Amanda? She is not a medical tourist. Not a stranger.
She was abandoned once by her birth parents. Now, she has been abandoned again, by the state that once claimed her.
“We just want her to live with less pain. To have the treatment she was once promised.”
Following his appeal, the Malaysian AIDS Foundation (MAF) said it has approved an emergency medication subsidy to restart antiretroviral therapy (ART) for Amanda.
“Getting her safely back on treatment is the immediate priority,” it said in a joint statement with the Malaysian AIDS Council (MAC).
Their case managers are also supporting Amanda with practical needs, including psychosocial support and links to social assistance, FMT reported yesterday.
They also said they would assist Amanda’s family in navigating her documentation and citizenship processes.
“(We) will liaise with the relevant authorities and partner organisations so that administrative issues do not stand in the way of lifesaving care.”
The groups said modern ART can suppress the HIV virus to undetectable levels, protect health and allow people living with HIV to lead full, healthy lives when treatment is maintained consistently.
MAF and MAC said they paid Amanda a visit to understand her situation in full after FMT highlighted her plight yesterday.
Damian is a poet, music educationist and composer. His children carry on the tradition, teaching and performing.
Even Amanda still responds to music. A melody can bring a smile.
“Music has always been our healing. But medicine is what Amanda needs to survive,” he said. – By Frankie D’Cruz/FMT
