Home>Service> Global Love of Lives Award> 16th Fervent Global Love of Lives Award> Cheng Tang-wei—Rare Disease Angel
 [Beacon of laughter and hope] 

Every cloud has a silver lining. You can achieve anything when you believe you can. 
—Cheng Tang-wei
 

Cheng Tang-wei is a ninth grader from Peishin Public Junior High School in Chiayi City, Taiwan. Since the third grade, she has been fighting with a rare, unknown disease causing frequent muscle spasm in her limbs. To date, doctors have yet to conclude on a diagnosis for her illness. 

In the first few years of her battle against the illness, Tang-wei felt vulnerable and helpless. Thanks to the unwavering support of her family, friends and classmates, Tang-wei has learned to embrace the adversities in life with a smile. 

She is now a part of a medical trial which could shed light on a more effective treatment in the future. She wishes that scientists all over the world can, through the trail, uncover the mechanism underlying the disease and come up with a cure.

An energetic and enthusiast about life person, Tang-wei believes that she can achieve anything if she put her mind to it. She encourages her fellow survivors to believe in themselves and overcome fear along the journey of rare diseases. Her story has inspired many to go the extra mile and persevere against great odds. 

Courage 

Born in 1998, Tang-wei is the second child in the family, with one older brother. Growing up, she was an optimistic and cheerful girl who won everyone’s heart. A sport enthusiast, she loved taking part in relay races in school meets. 

Her life changed when she started the third grade. She slowly lost control over her hands, elbows, feet and toes. Walking and writing became difficult tasks. As she walked, her hands and legs would twitch and jerk, attracting uninvited attention from passersby. 

Her deteriorating health condition caught the family off guard. Hoping for a cure, her parents took her to see all kinds of doctors and paid for various treatments, to no avail. Since doctors didn’t know what had caused the malady, they were unable to prescribe effective treatments. Depressed and helpless, Tang-wei often bathed herself in tears. 

She had become a frequent hospital visitor. However, she preferred the freedom to roam outdoors in the fresh air, like her classmates. Eventually, Tang-wei dropped out of school because she didn’t have time to do homework nor attend class.

Although Tang-wei hopes the disease is just a nightmare, she understands that reality does not square with her dreams. 

“I long for a day when I can run on the sports field like my classmates. I long for a day when I can write with my right hand and not my left one, which I’m not used to. I long for a day when the sun would shine on my healthy body. I often dream of that one day when I’ll be cured. However difficult and painful the treatment, I will stay optimistic and wait patiently for that day to come,”

Every cloud has a silver lining

As the Chinese proverb goes, “If the mountain won’t move, build a road around it. If the road won’t turn, change your path.” Tang-wei has learned that changing one’s fate begins with changing the way one thinks. Rather than taking the disease as a punishment, she begins to think of it as a gift from God. She found that she became a much happier person once she stopped complaining and worrying.

Tang-wei’s family, friends and teachers have all been very supportive along the way. When she felt deserted and unloved, her best friends gave timely comfort. Admitting your own short-comings and being okay with being imperfect helps one cherish what one has, they told her. 

One time, she turned down the chance to take part in an interschool flute competition, fearing her condition would bring down the overall score of the team. The teacher, however, came up with better plan. The teacher encouraged her to play the maracas or instruments easier to manipulate. Tang-wei came to realize that all things in their beings are good for something and giving up does not have to be the only option. 

One hand, one leg

Because of her perseverance in rehabilitation treatment, today, Tang-wei can stand, type and put on clothes using one hand and one leg. Despite her weak health, she is grateful for everything she has in life.

“Maybe you are not good at your studies. Maybe you think you are not popular enough. But being an able-bodied person is the greatest gift on earth. As long as you believe in yourself, you can achieve anything. Never doubt your own ability,” she said.

When God closes one door, he will open another window. Tang-wei used to think that God played a big joke on her, but now, she believes that one day God will reward her with a bigger miracle. In the meantime, Tang-wei will continue to live her life with courage and integrity.