MALAYSIANSKINI | Service delivery manager K Sivasangaran was blessed with his second child in 2017, a baby girl named Swathi Nisha Nair.

Swathi progressed relatively normal for a baby her age, said Sivasangaran, although he did notice little quirks of hers such as her floppy muscles and her tongue sticking out often.

However, it was not until she was infected with pneumonia at the age of six months that doctors noticed something different about her.

“Any normal child gets pneumonia, really, but Swathi’s was prolonged for almost 10 days. All kinds of treatments in the hospital didn’t work for her.

“It was then a doctor suggested that an X-ray be conducted,” he said during an interview with Malaysiakini.

It was through this X-ray that they discovered Swathi’s heart was abnormally large for someone of her size,  and an echocardiogram showed that her heart was only functioning at 25 percent.

It was later uncovered that Swathi had infantile Pompe disease, a rare inherited disorder caused by...