Eight-year-old Wu I-nuo (巫以諾) has always been a compassionate child. But after he learned that he inherited a rare ailment called Niemann-Pick disease 20 months ago, his compassion has become stronger.
Since the age of 5, I-nuo preyed to God every day, not for himself, but for his sick 12-year-old sister, Wu I-hsin (巫以欣).
PHOTO: WANG HSIAO-WEN, TAIPEI TIMES
After I-hsin went to elementary school, her increasingly unsteady gait and slurred speech bewildered her parents. For three days a week for the past several years, the girl and her mother Chou Li-lin (周麗玲) sat in waiting rooms of hospitals while different doctors provided different explanations of her illness. While her classmates spent their childhoods playing, I-hsin spent half of hers at the hospital.
"When we finally found out that this disease its killing my daughter, I was stunned. Why us? Why did God choose us to suffer?" Chou asked.
Like many other genetic diseases, Niemann-Pick disease strikes people with fatal consequences, leaving families shocked and confused. The disease arises as a result of flaws in DNA, causing a failure in the body's ability to dissipate cholesterol and lock steroid lipids in the liver, spleen, kidney, bone marrow, and finally the brain.
To add to the family's grief, symptoms of the disease are delayed for many years. Once discovered, it's only a matter of time before the disease will take its victim's life.
"We don't know when I-hsin will leave us, maybe tomorrow; maybe a few years from now," said Wu Chin-hui (巫錦輝), I-hsin and I-nuo's father. The calmness of his voice did not seem to surprise his wife and son sitting near him.
With no known cure, I-nuo and his parents decided to transplant the boy's bone marrow to his sister in the hopes of slowing the progress of the disease.
"It is so hard to tell the boy how sick his sister is," the father said.
"But when we did he nodded said that he understands and he wants to save his sister," his mother said.
Clinging to a thread of hope, the parents took the then 6-year-old boy to have a section of his skin sliced off and sent to Australia for analysis. What they anticipated is a result confirming that I-nuo's cells would not be rejected in I-hsin's body. It did not occur to the parents that boy's act of love for his sister would lead to the discovery of another tragedy.
The result from Australia indicated that -- like his sister -- I-nuo had also contracted the disease from his parents.
Since then, the children have undergone to all kinds of treatment. They have tried acupuncture, osteopathy, and nutrient drugs. Nothing was effective
Though the incurable illness drains I-nuo's energy and will gradually hamper his mental and physical development, the boy is still full of life. Looking at the couple's colorfully-illustrated weekly schedule of labor division on the table, I-nuo asks his parents, "What are you two doing after I go sleep?"
"We're going to talk to each other, I-nuo," his mother said. "You don't want daddy and mommy to quarrel, right?"
"You two are in love with each other every time after I go sleep," he hollered, sending his parents into a burst of laughter.
At other times, the eight-year old is confounded by questions too heavy even for parents.
"Mommy, if God really loves us, why does he make so many sick?" I-nuo asked when he saw other children with their own diseases in a summer camp last weekend.
The boy's compassion is manifested earlier than the disease. Two years ago, after I-nuo learned the news that NT$50 can help a child in Burkina Faso to go to school, he quit eating at McDonald's and saved his allowance and gave it to charity. Dissatisfied with his savings, the boy tried to earn money by sweeping the stairs of their apartment building and coaxed his mother to pay him ten dollars for washing dishes. Now he is ready to donate his fifth money-filled piggy bank to the children of Burkina Faso.
"Every time he sees children on television or in pamphlet, he asks me why they are starving," I-nuo's mother said. "Rarely does he ask me why he is sick."
The disease, it seems, has made the boy see his life in a different light.
When Chou took her children shopping, I-nuo told his mother to buy dresses for I-hsin but not to buy him anything, saying he already had too many clothes.
At the age of eight, I-nuo already knows how to take care of his sister.
"I have to take my sister to the health care room if she doesn't feel well," I-nuo said. "If she is sad, I will make her laugh," he added.
"Daddy and mommy pray for you every day," said the mother.
The next day, the parents would drive the children to school, go to work, and then wait for the children to come back to them at the end of the day.
"They deserve to go to school like other children, no matter how worried we are," said the father. "We only want them to be happy."
Currently, I-hsin's and I-nuo's conditions are monitored by the Department of Health. Their medical expenses are covered by national health insurance under the Rare Disease Prevention and Medicine Law (罕見疾病防治及藥物法).
Yet efforts stop there. Since the number of patients covered by the law is estimated to be fewer than 10, the market is far too small to motivate any research. In Taiwan, no medical research team or drug manufacturer has studied the rare disease, let alone explored the possibility of a cure.
"Children with rare diseases are a challenge to us. They ask us if our society is too indifferent to care.
They ask us if our government is too weak to protect them," said Serena Chen (陳莉茵), the managing director of the board of the Taiwan Foundation for Rare diseases.
"Sometimes I cry. But I really hope my cells can stop being lazy and wake up like me," I-nuo wrote in his diary once.
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