The life-threatening condition, known clinically as Tetralogy of Fallot (ToF) with multilevel obstruction, occurs when a baby’s heart does not form correctly and affects blood flow through the organ.
Baby Niang just turned one in September. Her family are underprivileged asylum seekers who do not receive any subsidies from the government, which means they have to bear all medical costs on their own.
Niang’s mother and father came to Malaysia in 2008, having fled conflict and persecution in Myanmar. They have since built their family here and have three other children, aged 10, seven and five.
Before the pandemic hit, her father Sing – the sole breadwinner of the family – was working at a restaurant in Sentul. But with businesses forced to close during lockdown since May last year, Sing has had to support his family through his savings and money borrowed from friends.
Thankfully, with the loosening of restrictions he is able to resume working at the restaurant, although he has received a pay cut.
“I work from morning to night to ensure I am able to earn enough for my family,” Sing tells FMT, adding that he sometimes comes home during lunchtime to check on Niang as she has recently been sick.
Her father notes that Niang is a cheerful and bright little girl who enjoys watching videos and playing with her siblings. But with her condition, she gets restless easily.
“There are times she will be crying and I get worried she is in pain,” he says.
Niang is in need of a ToF correction and left pulmonary artery augmentation surgery. The estimated cost is set at RM84,000 and the procedure will be carried out at Institut Jantung Negara (IJN), but only once the full amount has been raised.
Currently, about RM25,000 of the amount remains. All money raised will be paid directly to IJN for Niang’s surgery and aftercare.
This fundraising campaign is organised by Tiny Gold Hearts in collaboration with Yayasan Chow Kit, Give Asia, Maryam Saves a Heart, and Refuge for Refugees, who are all doing their best to ensure Niang gets the treatment she requires to survive.
Tiny Gold Hearts helps refugee children with congenital heart disease who are registered with the United Nations High Commissioner for Refugees.
To contribute to Niang’s surgery, donations can be made directly into CIMB bank account 8001143146 with the reference ‘Niang’. You can also make a donation via the Give Asia platform.
For enquiries, contact Niang’s campaign organisers Hasan and Amy, respectively, at 011-27441303 and 013-3533483, or email Tiny Gold Hearts at [email protected].