Sun, Jul 02, 2006 - Page 18 News List

An inspiration to us all

Lin Po-ting is 15 years old and suffers from Duchenne muscular dystrophy, but nevertheless makes the most of his life

By Jules Quartly  /  STAFF REPORTER

Lin Bo-ting, right, is helped by his monther while on a visit to the National Taiwan Science Education Center in Shilin, Taipei.

PHOTOS: JULES QUARTLY, TAIPEI TIMES

Like many teens Lin Po-ting (林柏廷) has a girlfriend, enjoys listening to soft rock and watching MTV. His favorite food is spaghetti bolognese, he reads manga comics and his mom fusses when he plays computer games for too long.

Unlike most other lads his dream is to walk again.

The 15-year-old has Duchenne muscular dystrophy (DMD), a disease that has left him unable to look after himself and trapped in a body that is inexorably destroying itself.

Even so, Lin manages to overcome the daily problems related to his condition and has succeeded against all expectations by passing his junior high school exams and making it to the top senior high school in Hsinchu (新竹), where he lives.

"He has the same feelings and ambitions as everyone else," says his mother Chen Hui-yu (陳慧瑜), who teaches Chinese. "And though he is impatient about being a patient he never complains."

Named after the French neurologist Guillaume Duchenne in the 1860s, DMD affects about one boy in 3,000 and is usually a hereditary disease, but can also be the result of spontaneous gene mutations. Those affected lack a muscle protein called dystrophin and this leads to progressive weakness that starts in the legs and affects the rest of the body.

The disease is incurable and fatal. Death usually results from respiratory failure. Sufferers can live to around 25, but according to one study the average life expectancy is 17 years. In 30 percent of cases there is mild mental retardation.

For Lin the symptoms began to show when he was a preschooler and had difficulty balancing. His calves swelled with fibrous material and felt rubbery. Muscle tightening in the calves pulled the foot down and back so he began to walk on his toes. In what is called Gower's maneuver, he used his arms and hands to raise himself to his feet.

"At 11 years old I started falling over and found it difficult to adapt. My life is not the same as other people because people have to look after me," Lin says on a trip to the Day in Pompeii exhibition at the National Taiwan Science Education Center in Shilin, Taipei.

When he looks in the mirror he sees an academic-looking kid with glasses and a few teenage spots. But his body is weak and his legs are painfully thin. His spine is deformed.

He has little control of his body and needs to be carried or pushed in a buggy. Though he can eat a hamburger with his hands, he finds it difficult to use chopsticks. It is increasingly hard for him to breathe or cough because he has a weak diaphragm and easily picks up infections.

Lin is aware that he's slowly wasting away, but dreams of becoming a famous researcher who finds a cure to the disease that afflicts him and others.

"I can't help myself, I can't go to the toilet, I can't walk, I don't know why I'm ill, so I would like to be a medical scientist and make myself better so that I can help other people like me," Lin says. "I would also like to exercise. Another dream would be to walk again one day."

At the exhibition he watches with unbroken concentration a BBC documentary about the end of Pompeii. He has to be carried up some stairs to see casts of those whose lives were cut short by the eruption in 79 AD.

Other kids flit from one exhibit to another, but Lin takes an intense interest in the remains of frescoes, ornaments and furniture of a city snuffed out in its prime.

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