Amanda will be admitted to Universiti Malaya Medical Centre (UMMC) on Monday, with her procedure scheduled for Tuesday.
Her journey has touched hearts across the country. On Nov 21, Malaysians responded generously to a desperate plea for financial assistance, contributing more than RM241,000 within 48 hours. The amount was enough to secure a device that could finally calm the violent dystonic storms inside her tiny brain.
Together with the RM60,000 raised since September, the total funds raised has reached RM301,197, a testament to a nation’s extraordinary compassion for a child most have never met.
For Amanda’s parents, Saifol Sujak Sulaiman and Nur Liyana Safiea, the days leading up to the operation have been an emotional mix of relief, fear and gratitude.
“Our feelings are 50-50. We are happy because the surgery can finally be carried out. But at the same time, there are risks we have to accept. So we pray that the risks involved can be minimised with the plan the doctors have prepared,” Saifol told FMT.
Liyana shared the same conflicting emotions. “I am happy that the surgery can be done,” she said softly. “But at the same time, the fear is still there.”
Hope and support
On Thursday, Suriana Welfare Society came to visit Amanda and they brought along a group of children. The gesture left the family touched in ways they struggled to put into words.
“We were very happy and welcomed everyone. We really appreciated it. We are not alone. We have a support system,” Saifol said.
He paused as he tried to explain how he felt about the visit, searching for words before offering a metaphor: “It feels like we are drowning, but there are people still holding our hands.”
The presence of the children, he said, brought unexpected joy.
“It brought so much happiness. I can’t express the feeling through words. The visit by the children brought blessings and emotional sustenance to our family. We really appreciate it,” he said.
Kamsiah Mohamed, who accompanied the children, said the purpose of the visit was simple – to give Amanda courage.
“We brought the kids to give Amanda encouragement, to help her feel calm. Even though Amanda can’t really talk, she can hear,” she said.
Kamsiah added that Suriana has only one hope for Amanda, and that is for her journey to be eased, and that her parents stay strong in facing this situation.
Forever grateful
The visit reminded Amanda’s parents of the journey their family has endured since she was diagnosed with the rare GNAO1 disorder.
“We always see children growing up perfectly. Even my first child grew up like any other, but our second child was destined to be this way,” Saifol said, adding that he hoped the children who visited Amanda would learn to be grateful for what they have.
Beyond the emotional support, he said the family would forever be grateful to Malaysians, FMT and the welfare groups who rallied behind Amanda.
“I am very, very thankful to FMT and NGOs like Suriana who always give us encouragement and keep us going with positive momentum.
“We are not related by blood, but in the name of humanity, we have sat together to tackle and solve this problem,” he said.