07 | Our Fighter
Eric Ma
A Life Unlike Any Other
Eric Ma’s extraordinary story began when he was just three years old. At that age, while all the other kids around him were undergoing rapid growth, Eric’s height remained stagnant and he was eventually diagnosed with Mucopolysaccharidosis Type VI, a deliberating, life-long illness. Though Eric has been diagnosed at a relatively a young age, he still remained in the dark about his very own disease for many years. It was only was after seeing the story of a fellow patient in the news did Eric learn what was in store for him in the future.
Silver Lining in the Clouds
The moment Eric truly realized he is different from the other children around him was when he entered primary school. Acting on the advice he received from a fellow MPS patient, Eric transferred into a special education needs (SEN) school. His experience in the school made him realize that he is already very lucky when compared to his classmates. For instance, his capacity for learning and ability to take care of himself exceeds that of many of his classmates. From this, Eric learnt the importance of empathy and counting one’s blessings.
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About Mucopolysaccharidosis Type VI
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Cause
Lack of enzymes that digest glycosaminoglycans, which would accumulate in their body gradually, and destroy body cells.
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Inheritance
Autosomal recessive disorder
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Occurrence rate
Estimated to occur in 1 in 250,000 to 600,000 newborns
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Symptoms
Short stature, rough facial features, recurring respiratory infections
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Effect
Heart-related diseases, abnormal growth of bones affects motor ability, different senses like eyesight and hearing will deteriorate gradually.
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Treatment
Type VI patients can receive enzyme replacement therapies to improve their symptoms, and bone marrow transplantation has proven effective.
“I often think, is using 4 million dollars to treat a useless teenager, or to give 100000 people influenza vaccination more worth it?”
A Heart of Perseverance
As a rare disease patient, Eric certainly has faced a fair amount of challenges before he could arrive at where he is today. Due to accumulation of glycosaminoglycans, he has almost lost count of the number of times he went under the surgical knife. A particularly major operation involved a tracheotomy, causing Eric to be unable to speak and eat normally for over half a year. During secondary school, Eric’s vision experienced serve decline, which proved to be a particularly large impact to someone who is a book-lover and a passionate learner. All these setbacks have taken a toll on Eric, yet Eric instead thinks these ups-and-downs managed to instill in him a sense of stubbornness and perseverance. Thanks to the efforts of scientists around the world, a treatment for Mucopolysaccharidosis Type VI was finally invented in 2006, bring hope to patients around the world.
The Generosity of Hong Kong
Among all the things he experienced since diagnosed with MPS VI, Eric is most grateful for the love and generosity he found in the midst of Hong Kong. Indeed, as Eric often asks himself—should the government spend four million dollars to save a NEET, or should it be used to give 100,000 people the flu vaccine? What makes him thankful is that even though Hong Kong people are profit minded, people still understand rare disease patients are not unwilling to pay for medicines, but simply cannot afford them. They also strongly support the cause for rare disease groups. They donate money and do volunteer work often. This made Terry deeply feel the love of Hong Kong people. Thanks to his medications, Eric has already retired from the front line of advocacy, but he hopes that his story can help patients stand up bravely and rely on tehir own strength to strive for policy progress. Eric also referred to himself as an ant; although small and inconspicuous, these ants can be powerful when gathered together, just like a rare disease patient. As long as they work together, they can finally bring about change.
“The government has the ability to develop policies for rare diseases, but they never act until the society pushes them to do it.”