The first signs were innocuous. Her little belly grew faster then the rest of her tiny frame did. Yet she didn’t seem to be eating the amount that matched the swell. Dad and Mum brought Zecia for many consultations..GPs, TCMs, the religious guru.. “poor digestion”, “too much ‘wind’ “, “a weak stomach”, “oh! its nothing much, its normal”.. All manners of diagnosis, all kinds of prescriptions.
Still, Zecia’s belly grew, became bloated, while her arms and legs remained scrawny. When she finally mastered walking, she did so with huge difficulties. She tripped and fell all so often, it almost was a habit. Clueless aunts and uncles teased that she walked like a penguin. Innocent mummy occasionally chided her for being too lazy to walk… Never realising that brave little Zecia was really suffering.
On 9 October 2011, Zecia suffered another fall, landing hard on her head. Another time too many. Worried parents rushed her to KKH and she was warded for observation but was discharged the next following day. On 14 October 2011, barely a day after Zecia’s little sister was born, Zecia was re-admitted in KKH as she was restless and had no appetite after her fall few days back. By this time, Zecia’s bloated tummy, poor sense of balance, frequent tiredness and many other seemingly unrelated symptoms had persisted for almost a year. Dad and Mum decided that enough was enough. They were determined uncover the cause once and for all. The doctors were consulted, the specialists were summoned and detailed diagnosis was ordered.
On 18 Oct 2011, troubled Dad was called to meet with a team of doctors. We prayed hard to not hear what we were about to be told. “Zecia may be suffering from Gaucher Disease.” Gauch..what?! Dad didn’t know how to spell the word when texting the news to frenzied Mum who was still in confinement after her delivery. It was an illness we’ve never heard of, never expected; it was a disease so rare only 2 other patients have it in Singapore.
Gaucher is a genetic disease and virtually incurable but treatable. Untreated kids inevitably cannot survive. Besides a successful bone marrow transfusion that would allow replace her deficient blood cells, Zecia’s only other option was a yearly ERT (Enzyme Replacement Therapy) treatment that would cost at least $400,000 per year.
As the medicine is expensive, the family is unable to afford the treatment on their own. Futhermore, Zecia has two siblings, and a grandfather who is receiving treatment for cancer. Fortunately, the hospital managed to source financial assistance for the family to reduce the burden.
Today, Zecia frequents the wards as often as her peers visits the beach. Zecia has needles poked into her as much as her friends get lollipops. But brave Zecia never gives up. Still tearful from the last IV, she tries to cheer her teary mum, “Zecia’s hand is thirsty, wants to drink!” as she cheekily smiled at the drip. ERT will allow brave little Zecia to walk, climb, play, just like her friends, her cousins and all her children in this world deserve to… She hopes for her chance. You can help her.
Will you give Zecia the chance to run among the grass, to climb the slides, and to enjoy the simple joys of life, like all kids deserve? Her father says she loves to draw and enjoys doing paper craft, and hopes to be an artist when she grows up.