Shared Destiny
Among the ten or so Pompe Disease patients in Hong Kong, Terry and his older brother were the first two to be diagnosed. Back when his brother was first diagnosed with Pompe disease, the 9-year old Terry was already warned he might share the same fate. Even so, Terry at the time remained in denial he might also be a Pompe Disease patient, and instead devoted himself to vigorous exercising to prove to his parents and himself he is fine. Even so, as his lower limbs started to lose strength and his back started to hunch, Terry knew it was he had to accept his fate.

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The Perfect Ending to a Chapter

The turning point for Terry and his brother came in 2010. A year ago, as his brother’s condition rapidly deteriorated, doctors told Terry’s family to prepare for the worst. Yet even as the rest of his family gave into despair, Terry refused to give up hope. After exhausting all available resources, Terry at last caught wind of a new enzyme replacement therapy developed overseas that was about to launch in the commercial market soon. To save his brother’s life, Terry decided to bring the issue of rare disease under media spotlight, so as to raise public awareness and force the Hospital Authority to allocate funding for the new treatment. For Terry and his family, all the stars aligned and their media campaign was a resounding success. Over seven media outlets were fighting to interview Terry’s brother and his story made headlines in just as many newspapers, arousing widespread sympathy among the public. Looking back at the numerable hardships his family faced since his brother’s diagnosis of Pompe Disease, Terry believes getting the Hospital to approve the needed treatment for him and his brother marks the perfect ending to this chapter of their lives.

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