For 42-year-old Santi Ayuni, it has become the rhythm of her life. Beside the machine lies her one-year-old son, Awang Muhamad Alif Affan – a child who should be discovering the world with joy.
Instead, his days have been shaped by hospital visits, tubes, and the constant uncertainty of a heart that struggles to keep up with his body.
“The doctor once told me if his heart stops, his life may be cut short. All we can do is wait and cherish every day with him,” Santi said, fighting back tears.
“Sometimes I ask myself, why did this happen to my child? Sometimes I think it is all my fault.”
Awang was born with Down syndrome and a serious congenital condition known as Tetralogy of Fallot: a hole in his heart and narrowed blood vessels.
He has already undergone a heart procedure at just two months old, followed by throat surgery at six months. Now, he waits again.
Dependent on oxygen support at home, his family is holding on for news about his next lifesaving operation at the National Heart Institute (IJN) in Kuala Lumpur.
The waiting is its own kind of hardship, made heavier by a recent fever that forced doctors to delay the surgery. Each day feels like borrowed time and, for Santi, that uncertainty never lifts.
“As a mother, I am very sad. All I can do is hope he will heal after the surgery. Right now, I am very worried. Every day I pray that he will remain healthy until then,” she told FMT Lifestyle.
The family is trying to raise RM15,000 to cover Awang’s medical needs, daily care, and the surgery that could give him a chance at a healthier life. As of April 19, just RM4,389.20 has been raised.
Caring for Awang requires constant attention, and constant expense. He needs a specialised high-protein milk formula, a steady supply of oxygen, diapers, and frequent hospital visits, costing about RM1,500 each month.
Santi has had to stop working entirely to care for Awang full-time while raising two other children. For a family relying on a single, unstable income from her husband’s work as a driver, the burden has become overwhelming.
Thankfully, the family now has the support of welfare NGO Pusat Kebajikan VCare Kuala Muda, who have stepped in to help raise the funds required.
According to social worker Jeanna Goh, the family has done what they can to cope. “They have been using their limited savings and seeking help from relatives, but their resources are very limited and are depleting,” she said.
Even so, Santi holds on to hope. “As he needs special and extra care, everything has to be done carefully. After the surgery, I hope and pray that my son will remain healthy,” she said.
Her plea is simple: “Please help lessen my burden. We are really struggling. And please pray that the surgery will go smoothly, that my boy will heal quickly and be able to live a normal life.”
If you can help, please contribute to Bank Simpanan Nasional (BSN) account 0219 0411 0012 2711 (Persatuan Kebajikan VCare Kuala Muda).
Please use the reference ‘CASE44’ or ‘AFFAN’.
For further information, contact Jeanna Goh at 016-337 2749.
Find out more about Persatuan Kebajikan VCare Kuala Muda here.