The Mah family spends their off days like most in Singapore. They would bring their 3 year old daughter Chloe and her younger brother Cayden out for a swim or a walk in town. Little Chloe is especially excited when they do. A keen curiosity for the world beyond home has developed, where once it was a task to even bring her out of the bedroom to the living room, the couple now finds it hard to pry their darling first-born out of the car when an excursion is over.
Conventional routine, for a rather unconventional family.
" Some members of the public would shun Chloe when they see her in a wheelchair, or cast uncomfortable looks. Sometimes they even pass comments behind our backs, like we must have done something bad in our lifetime, that's why our daughter turned out this way." Patricia recounts in our interview.
Diagnosed at 7 months with Pompe disease, Chloe is the first documented case of this rare hereditary illness in Singapore. Doctors had given her a few months more to live, before her first birthday. But through sheer will and what the couple can now only attest to as a miracle, little Chloe has lived through 3 birthdays and is making vast improvements, requiring only minimal use of respirators and other machinery which she relied heavily on as a baby to stay alive. In those trying initial years, Patricia and Kenneth started a facebook page and documented the process, partly asking for funds and partly to spread awareness of the disease.
Chloe is not the only case of rare disease in Singapore, but because these disorders are so few and far between in occurrence, it has proven to be an uphill battle for the couple and others like them to find financial or emotional support. " The hospital staff were stumped when they first realised that they might be dealing with a case of Pompe disease, no one dared to do anything till they got in contact with a foreign specialist." Afterwards the doctors painted a grim picture for the couple should they decide to pursue treatment. Chloe's situation was exceptionally difficult, because treatment for Pompe disease needed to begin at 3 months. At 7 months and with an enlarged heart that threatened to fail, her chances were slimmer than ever. Still, the couple decided to take the risk. They enlisted the help of Professor Chen Yuan-Tsong, a specialist in the treatment for Pompe disease and Chloe became the first Singaporean to receive ERT treatment. You can read about the professor's story in a previous publichouse.sg story.
Though the couple earned a decent living, the staggering costs of Chloe's treatment, even after help from the hospital's endowment fund, remains a heavy burden.
Currently, monthly expenditure averages at $20,000 on Chloe alone. The couple is unable to receive help from the government because they are not considered a low income family. Means testing with which the government decides if they are eligible for financial aid, failed to see that that the expenditure required for Chloe's treatment far outweighs their earnings. Apart from KK's endowment fund, there are no other associations that they can seek help from.
" That is why we started the Rare Disorder Society (Singapore) (RDSS), to create a louder voice so that there will be more awareness and support for families like us." Patricia explains. The problem with rare disorders are that the patients are treated as unique cases and not viewed as part of a community. Without the power of numbers behind them, essential needs are overlooked. The issue of funding aside, the lack of training in rare diseases hardly prepares hospital staff for cases like Chloe's. Patricia remembers an incident where she and Kenneth had to resuscitate Chloe themselves as the paramedics were not familiar with handling her. A dangerous situation for families who may not have a caregiver at hand.
Through RDSS, Patricia and Kenneth hope to bring attention and in turn a more holistic system that bears those with rare disorders in mind, not just in terms of financial aid, but through educating the masses on their attitudes toward those who are different. What the couple and I'm sure any parent wants is an environment in which their child can feel accepted and be confident enough to find happiness. A person is only as handicapped as society makes him/her out to be after all.
In a country such as ours, decidedly Asian in values, meritocratic in aspirations, the line between able and disabled is clearly drawn. Yet the story of Chloe, though arduous and challenging, is exceptional not in its misfortune, but in the the triumphs that came with it.
When asked how Chloe has changed their lives, Patricia and Kenneth were open with their answers. Before Chloe arrived, they described themselves as pragmatic people who knew nothing of rare diseases, let alone the spirit that allows one to fight against it. " It's only rare, till it happens to you." Patricia tells me. But turning the negatives into positives came from a strength neither knew they had. What Patricia hopes now, through their efforts, is to build a society that enables Chloe and others like her to live with their strengths and not force them to focus on their weaknesses. A piece of advice many of us can benefit from.
Kenneth's transformation from a archetypical male of the family, initially doubtful of his wife's choice to pursue treatment, to the now zealous stay-at-home caregiver, is a remarkable story in itself. " He owned a business while I worked a salaried job," explains Patricia, " And we decided that it would be better for him to wind down his business, which did not promise a stable income, and stay home to take care of Chloe." Bucking the trend, and his own upbringing and understanding of being "the man of the house", Kenneth believes he is a different and better man because of Chloe. He was recently given a Caregivers' award and is tremendously proud of the achievement. " I've learnt to enjoy the process, not look at the end result." he reveals, enjoying each day with Chloe, watching her blossom under his care.
There are friends of the family who still question them on the sacrifice. What is the point for them to spend so much time, money and effort to keep her alive, when the disease could claim her anytime anyway? The couple admits that before they had Chloe, their sentiments were not far from theirs. Chloe in many ways, opened their eyes to a new and far more fulfilling way of viewing life, where money is secondary to kinship and instinct. Patricia remembers one night when Chloe's heart had stopped, and how she was revived just as Patricia yelled out her name. " Call it maternal instinct, but I saw it in her eyes that day that she wanted to live." It was this instinct that strengthened her resolve to proceed with the treatment. And it is because of this instinct that 3 year old Chloe was lying on the couch next to us, enjoying an afternoon nap with her little brother.
We often hear, in moments of loss, how one would willingly give up their fortune, even shorten their lifespan, just to have a loved one by their side a while longer. Kenneth and Patricia are doing just that, except that they are leaving no room for regret, because for all their sacrifice and effort, they earn another priceless day with Chloe and help pave the way toward a better world.