David Lang is a lecturer at Singapore Bible College.He is married with three children.
Justina was born in 1991. Timothy came in 1993. Then Titus arrived in 1996.
They are a bundle of joy for any parent.
Justina was bubbly and loved reading and singing. At one, "she could name 100 objects from a picture book."
Same goes for Timothy.
Calvin Yang, the journalist who followed the story, wrote: "Timothy was a keen learner who played the violin. When he was three, he could climb a monkey bar more than 20 times without getting tired."
Titus was another gifted child. He could "solve primary school maths questions two years above his level."
Then, things began to change when Justina was five. "She started having seizures, spoke less and started to walk with difficulty. She seemed to be very lost in school," David recalled.
Subsequently, she was "placed in a school for children with special needs." At that time, the doctors could not come up with a name for her condition.
Timothy followed soon. He was eight when he too had seizures, often falling when going down steps, and "found swallowing food difficult."
"At a church camp in Johor in 2004, (he) suffered seizures after
choking on his breakfast. He was rushed to Kulai Hospital and later transferred to Singapore's National University Hospital, where he died after 19 days in coma."
David said: "I miss him dearly, even till this day. He is now in a better place, where there is no more pain."
It was at this time that doctors were able to give a name to the dreaded condition.
It was known as "Niemann-Pick disease type C". It is a "rare genetic disorder that causes their cognitive and physical functions to degenerate."
It should be noted that "the autosomal genetic disorder affects about one in 150,000 people. There are around 500 diagnosed cases around the world. When both parents are affected, there is one in four chance that their child will have the disease."
David said: "To have all three kids affected is extremely rare."
David was referring to his third born, Titus. Like his older siblings, he too was tested positive.
Taking care of the two of them is equivalent to juggling three full time jobs, 7 days a week, 365.
Justina, 26, and Titus, 21, "need lung-suctioning round the clock and are put on ventilators when they sleep."
"Their five-room flat in Farrer Road runs like a mini-hospital, fitting with equipment such as blood pressure monitors, ventilators, auction machines and pulse oximeters," the article reported.
David's monthly take home is $5000 but that is barely enough to cover the $7000 to $9000 the family spends on "drugs, utility fees needed to run the equipment, the two helpers' salaries, checkups and expendables like suction catheters and feeding bags."
The family rely on "to two used cars - a 13-year-old Toyota Wish and a 28-year-old Toyota Corolla - to ferry the children and their special tilt wheelchairs around."
David said that they received money and gifts from strangers, and his family cope with "help from family members and church friends."
"It would be great if we can take them for a holiday in the US, but it is just a wishful dream," David added.
For now, he and wife are soldiering on. He said: "Their ability to smile or respond a little already gives us a lot of joy."
Lesson?
There is really not much to say here except statistics. Most times, such testimony leaves many speechless and reflecting a lot.
Now, back to the stats.
Recall that this rare genetic disorder affects one in 150,000 people, and thus far about 500 suffer from it.
At the risk of oversimplifying probability, another crude way to look at it is that if you keep the world's population to 149,000 and no more, your offspring might just escape that dreaded condition?
Underscore "might" (as it doesn't strictly work that way).
My point is that the mutation (subject to the bombardment of changing external circumstances) will happen one way or another in a random manner whether the number is 10 or 150,000.
Niemann-Pick disease type C might just strike at the 9th or the 150,000th child born to the world.
Or it might strike thrice at one go and leave many births untouched for a long time before striking again.
Or it may be such that at some point of our advancement in medical science, we may just be able to identify, address and reverse that mutation in all threatened births before it manifests full blown in a growing child - like what we did with polio.
But until that day comes, each of us starting a family will be at the mercy of blind statistics, that is, every birth in 150,000 will risk a mutation that would confront the parent with a choice whose cost would be unthinkable.
This is where my point comes full circle. From general statistics, I return to David and his family, that is, real lives in the line.
David said: "I was often angry with people and even God. There were times I felt depressed. But because our children's lives depend on us, and we know God is with us despite what we were going through, we had to carry on."
This is what is so redeeming about humanity, even if they do not exist in the majority. The redemption is not in our invulnerability (for such there is no need for God). It is in our flaws and vulnerability and how we overcome them with a love that is not from this world that saves us from ourselves.
And while statistics may be impersonal, indifferent and cold, the love of David and his wife is not. It is simply inspiring, and sobering.
As I write this, I am merely penning my thoughts down. But his family's decades of devotion through the pain and sacrifices go beyond words, theories and philosophizing.
In the core of such human struggles is a spirit that constantly reminds us of what joins us all together. It is the spirit that needs no embellishments or rhetoric. It is the spirit that can be gleaned from these words: "We had to carry on".
And the only motivation for such devotion is love. A love that cannot and will not let go. A love that will see to its own completion. A love that all of us are indebted to. Cheerz.
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