Six-year-old Dhia Amanda lies on a small mattress by the window, soft toys scattered around her like friends she cannot reach.
She cannot speak. She cannot play. She cannot say if she hurts. Her body trembles. Sometimes it jerks violently, sometimes the spasms strike without warning – a twist, stiff limbs, a thud.
Her mother Nur Liyana Mohd Safiea is there, pressing her forehead to Amanda’s, whispering, “It’s okay, sayang. Mama’s here.”
Amanda grips her mother’s shirt, her only anchor. This is what life looks like when a child’s own body turns against her.
The cruelty of GNAO1
Amanda has a rare genetic disorder known as GNAO1 neurodevelopmental disorder, a condition so uncommon that many doctors only read about it in journals.
But for Amanda, it is her entire world.
GNAO1 scrambles the brain’s signalling pathways. It traps a person inside a body that jerks, twists, stiffens and contorts with no warning.
It steals speech. It steals mobility. It steals rest. Worst of all, it can trigger status dystonicus – a prolonged, violent storm of spasms so severe that it can become life-threatening.
For her parents, the worst agony is not the disorder itself. It is the helplessness. Standing over your child, watching her body attack her, knowing you can do nothing to stop it.
That is the kind of grief that ages a person.
The one slender hope, and its brutal price tag
There is a treatment, not a cure, not a miracle, but a mercy.
A deep brain stimulator, a small device implanted in the chest and connected to electrodes in the brain. It helps regulate the electrical storms that cause dystonia.
It cannot make her walk. It cannot make her talk. It cannot give her childhood back. But it can give her something her parents have not seen in years: Peace. Rest. Stillness without pain.
The US-made device costs RM150,000. Amanda’s family needs RM250,000 for the operation, hospital care and post-surgery charges.
For a little girl who cannot speak, this device is her only voice – a way of telling her body: enough.
A family running out of strength
Saifol Sujak Sulaiman and his wife are not asking for a miracle. They are asking for relief.
The RM3,000 a month for therapy, oxygen support, feeding needs and hospital visits is already a weight they carry quietly.
When Amanda turned three, she had to be fed through a tube. When she turned four, the seizures worsened. When she turned five, the spasms began to last longer.
Now, she is six. And tired.
Saifol often sits at the edge of her mattress long after she has fallen into a trembling sleep. “We just want her to rest,” he said softly. “To stop hurting.”
He doesn’t raise his voice. He doesn’t blame anyone. But there is a grief in the way he exhales: the grief of a man trying to be strong for a child who cannot understand strength.
They applied to programmes and agencies. One helped with RM20,000. Others promised support but could not commit the large sums needed.
The gap remained a mountain. Dec 16 – the deadline for the device – loomed like a shadow.
The lifeline: A team that couldn’t look away
Then came a knock neither parent expected.
Suriana Welfare Society received Amanda’s case. The pictures. The videos. The medical reports.
The horror brought tears: The uncontrollable shudders. The tiny girl gripping her mother’s shirt as though the fabric itself might keep her alive.
“When we saw the child’s condition, we couldn’t sleep,” said James Nayagam, Suriana’s adviser.
He, Suriana’s executive director, Rachel Ho, and their team didn’t discuss publicity. They didn’t craft talking points. They didn’t talk about what they couldn’t do.
They looked at the child. And they acted.
“We told the father: register her for surgery. Don’t wait for money. We will raise it.”
That was not a pledge. That was a leap without a parachute. Suriana committed to the cost of the device and the surgery, with zero money in hand.
A Malay child. An Indian-Malaysian social worker. A multiracial team racing time. Humanity moving quietly.
The painful contrast: big funds elsewhere, but not here
Nayagam understood what many were afraid to say out loud.
Some urgent cases Suriana had handled received large donations, and quickly. RM340,000 for one. RM450,000 for another.
He said it without resentment, without politics, without comparison. Just fact.
Then came the blade: Only RM57,488.94 has trickled in for Amanda as of Nov 20.
Not because Malaysians don’t care. But because sometimes a child suffers in silence, unseen. Pain doesn’t recognise race. Suffering doesn’t follow headlines.
Yet somehow, this little girl – this trembling six-year-old lying in a small home in Cyberjaya – slipped through our collective attention.
The deadline that could decide her future
The clock is merciless. Dec 16. The deep drain stimulator must be fully paid for before it is shipped.
Suriana has already said “yes” without the funds. They jumped first. Now they need Malaysians to build the parachute before the ground arrives.
The device itself is tiny. Smaller than a child’s palm.
Yet inside it lies the power to calm the storm in Amanda’s brain: to turn violent tremors into gentler waves, to give her moments where her body is her own.
It is not a guarantee. But it is a chance. And that is more than Amanda has ever been given.
What Malaysians can give her
This is not a story about pity. This is a story about responsibility. Amanda cannot speak for herself. She cannot explain her pain. She cannot plead for help.
But we can.
Her body fights her every day. Malaysians can fight for her. No amount is too small. No gesture is wasted. No donation goes unnoticed. Every ringgit is a chance for her to rest.
Tonight, when most six-year-olds drift into dreams filled with birthday cakes, school bags and playgrounds, Amanda will lie awake, her small body trembling under the weight of a condition she cannot name.
Her mother will place a hand on her chest. Her father will listen for every thud. The toys around her will remain untouched.
Amanda does not know that Dec 16 is coming. She does not know that strangers are fighting for her. She does not know the meaning of hope.
She only knows pain.
And the rest – the chance for relief, for mercy, for stillness –
is up to us.
How you can help:
Donate to Suriana Welfare Society Malaysia (RHB Bank: 21403500165118), reference: Dhia Amanda. All cash donations are tax-exempt.
Share this message with your networks. Sponsor or partner with Suriana to sustain Amanda’s medical care.
For details, contact 012-211 4444 (Rachel Ho), 017-755 8022 (Mary Rufina) or 1300-88-2200 (Anthony Ammah).