This Aidilfitri, a little girl can finally rest

2026-03-20 - 00:40

Dhia Amanda rests comfortably in the arms of her father, Saifol Sujak Sulaiman, as her mother Nur Liyana Safiea and sister Dhia Auliya look on at their home. After life-changing brain surgery funded by public donations, Amanda is calmer and able to smile more often. PETALING JAYA: The photograph feels almost sacred. A father cradles his daughter in his arms, holding her close as if she were the most fragile thing in the world. Six-year-old Dhia Amanda leans into him, her small face calm, a charming smile forming where pain once lived. Across from them, her mother watches with relief that words cannot capture. On the floor nearby, Amanda’s eight-year-old sister, Dhia Auliya, plays softly with a large brown teddy bear. She moves its paws and makes it talk, the way older sisters do when they try to share a game. Amanda cannot hold the bear yet. But she watches it closely. Sometimes she lets out a small sound — not quite a word, not quite a laugh — and the room brightens instantly. For this family, that tiny sound is a victory. In that quiet moment, thousands of Malaysians — most of them strangers — helped make that smile possible. Not long ago, moments like this were painfully rare. For nearly six years, Amanda lived inside a body that would not listen to her. A rare genetic condition, GNAO1 neurodevelopmental disorder, triggered violent dystonic spasms: sudden twisting movements that could leave her bruised, exhausted and unable to sleep. Her parents, Saifol Sujak Sulaiman and Nur Liyana Safiea, spent years carrying her through hospital corridors, sleepless nights and moments when the spasms grew frighteningly intense. Then something remarkable happened. When FMT published Amanda’s plight, Malaysians responded with an outpouring of compassion. In less than 48 hours, strangers across the country opened their hearts, and their wallets, raising more than RM300,000. It was enough to fund the surgery that could calm the storms inside Amanda’s brain. For a child who had spent years trapped in a body that would not listen, Aidilfitri this year feels different. Because this time, the celebration carries the knowledge that she did not fight alone. Neurosurgeon Dr Kamal Azrin Abdullah (left) and Suriana Welfare Society executive director Rachel Ho (centre, right) monitoring Dhia Amanda’s progress. A small device, a large mercy The funds allowed doctors to perform deep brain stimulation (DBS) surgery for Amanda. The procedure implants tiny electrodes in precise areas of the brain that control movement. These electrodes connect to a small pulse generator placed under the skin in the chest, a device that works much like a pacemaker. It sends steady electrical signals that help regulate the abnormal brain activity responsible for dystonia. Dr Kamal Azrin Abdullah, the neurosurgeon who led Amanda’s operation at Universiti Malaya Specialist Centre, said the change after surgery was clear. “DBS does not cure the genetic disorder,” he explained. “But it does something very important. It quiets the abnormal signals in the brain and reduces the involuntary movements.” For Amanda, that quiet means fewer spasms and fewer injuries. It means sitting without sudden pain. It means sleeping longer without being jolted awake by her own body. “When we saw her after the surgery, she was calmer,” Kamal said. “Her parents looked relieved. That moment told us the operation had done what it needed to do.” For Saifol, the transformation still feels surreal. Dhia Amanda rests in hospital following surgery to regulate abnormal movement signals. “All we ever wanted was for her to stop hurting,” he said softly. “Now she smiles more. She is calmer. People we have never met gave our daughter this chance. “This Aidilfitri, we may finally celebrate with Amanda beside us. Before this, there were times we had to wait in the car during visits to relatives because her spasms and painful cramps would suddenly overwhelm her.” Rachel Ho, executive director of Suriana Welfare Society, said the public response reflected something powerful about Malaysians. “Once the story reached readers, the calls and donations came in quickly,” she said. “People from every background wanted to help. “It was not about race or religion. It was simply about a child who needed help.” The donations paid for the medical device, the surgery and the care Amanda urgently needed. Without that collective effort, the procedure might never have happened. “This is what compassion looks like when people act on it,” Rachel said. Amanda’s recovery will take time. She will still need therapy and follow-up care. But the most urgent battle, the one that threatened to trap her permanently in unrelenting shudders, has been fought. Back in the living room, Amanda watches her sister move the teddy bear across the floor. Her father steadies her gently. Her mother smiles in disbelief. Outside, Aidilfitri approaches — a season of forgiveness, gratitude and family. Inside this home, one prayer has already been answered. For the first time in her young life, a little girl is discovering what peace feels like.