But for Saifol Sujak Sulaiman and his wife, Nur Liyana Mohd Safiea, life is very different.
Their six-year-old daughter, Dhia Amanda, lives with GNAO1 disorder – an extremely rare neurological condition caused by a mutation in the GNAO1 gene (a protein-coding gene known as “Protein Subunit Alpha O1”).
Doctors have told Saifol and Liyana that their daughter’s brain sends out “faulty electrical signals”. As a result, she suffers sudden, violent and uncontrollable muscle movements and spasms – a condition known as “dystonia”.
For Amanda, these episodes are intense and painful, and can eventually lead to a serious and potentially life-threatening condition called “status dystonicus”.
So, while other children her age enjoy carefree days, Amanda’s are filled with pain, exhaustion and a constant battle within her own body.
At the tender age of three, she had to undergo a procedure to insert a feeding tube in her stomach.
According to the website ScienceDirect, as of January 2025, about 400 people globally suffer from GNAO1-associated disorders. Presently, there is neither a cure nor an effective long-term treatment for this disorder.
Yet, for Amanda’s family, there is a glimmer of hope: deep brain stimulation (DBS) surgery.
“This surgery isn’t meant to help Amanda stand or speak, but at least, it can help control her aggressive movements,” Saifol, 41, told FMT.
“She will still be bedridden, but calmer – no longer hitting her hands or body to the point of hurting herself. For us, that alone means a lot, because her quality of life, and ours as her caregivers, will be much better,” he added.
The procedure is estimated to cost around RM250,000, including the cost of a device which will be implanted in Amanda’s chest wall.
This device will send high-frequency electrical impulses to targeted areas of her brain, helping regulate the abnormal signals and reduce the severity of her symptoms. The total cost also covers post-operative care.
The surgery is vital and potentially life-saving, but the cost is far more than the family can afford.
Every month, they spend RM3,000 on Amanda’s needs – from special formula milk and sedative medication to support equipment such as an oxygen machine and phlegm suction device.
To raise funds for the procedure, the family has started selling various types of frozen snacks: curry puffs, cucur badak, cek mek molek, kuih kasturi, and popia otak-otak.
Yet, their efforts can only go so far. Thankfully, Suriana Welfare Society Malaysia – a non-governmental organisation dedicated to supporting vulnerable communities, among others – has stepped in to assist the family.
Suriana’s executive director, Rachel Ho, told FMT Lifestyle that the organisation has received RM10,930 in donations as of Oct 31. Far more is needed so Amanda can have a better quality of life.
Time is of the essence. Amanda is due to undergo a pre-operative assessment and a brain MRI under general anesthesia this month at the Universiti Malaya Medical Centre (UMMC).
Subsequently, she is scheduled to undergo DBS surgery at UMMC towards the end of 2025.
Dr Kalai Arasu Muthusamy @ Kamal Azrin Abdullah, associate professor and consultant neurosurgeon at UMMC said the little girl would benefit greatly from the surgery.
“In Amanda’s case, which is severe and refractory to medication, DBS has shown efficacy in improving motor symptoms and resolving ‘status dystonicus’, especially for severe dyskinetic crises.
“DBS will improve her hyperkinetic moments, and, as a whole, improve her quality of life,” Kalai added.
“Your contribution – no matter how big or small – will make a real difference in giving her a second chance at a better, safer life,” said Saifol.
How you can help:
- DONATE to Suriana Welfare Society Malaysia, RHB Bank account: 2 14035 0016511 8, with the reference ‘Dhia Amanda’. All cash donations are tax-exempt.
- SHARE this message with your friends, family and community.
- SPONSOR or PARTNER with Suriana Welfare Society Malaysia to sustain ongoing medical support for Amanda. For more information, contact 012-211 4444 (Rachel Ho); 017-755 8022 (Mary Rufina); or 1300-88-2200 (Anthony Ammah).
Learn more about Suriana Welfare Society Malaysia here.