Dancing with teddy bears and deathShin Won-kyoung loves chocolate milk, Teletubbies and puppies ― your average 5-year-old. With her big, twinkling eyes, Won-kyoung is the light of her family ― but alas also a candle flickering in the wind. This girl suffers from Hyper-IgM Syndrome, a rare immunodeficiency disorder whose cure has not been found. Korea has reported to have had just five children with this disease. Three could not see their teens ― the oldest child died at the age of 10 ― and the two survivors include Won-kyoung. In the United States, when one woman afflicted with Hyper-IgM reached her early 20s, it was called a miracle.
Koreans have a saying that the most disloyal thing you can do to your parents is to die before they go. Won-kyoung, even before she knows it, will likely be such a child.
Her mother, Moon Hee-jeong, says, “I would give anything if I could light 20 candles on Won-kyoung’s birthday cake.”
Ms. Moon does not wish to be alone. Won-kyoung’s supporters number more than 100,000. On May 3, Won-kyoung’s birthday, members of “Cheer Up, Won-kyoung” threw her an unforgettable birthday party in the Sejong University’s Daeyang Hall, where thousands gathered up to watch Won-kyoung blow out five candles. A group of well-known singers also volunteered to perform after hearing Won-kyoung’s story. For Won-kyoung’s birthday, her mother compiled a collection of her essays into a book, titled “Sorry I’m Sick Mom.”
It’s Friday afternoon, and Won-kyoung is playing with her best friend LaaLaa, the yellow Teletubbie. She runs around her small room with LaaLaa until her favorite cartoon, “The Powerpuff Girls” begins on TV. Although small, her room in a compact apartment in Ssangmun-dong, northeastern Seoul, has a toy store’s worth of Garfield, Winnie the Pooh and teddy bear dolls. She once badgered her mom to buy her a puppy, but gave up after hearing her doctor say it could be fatal. Ms. Moon says, “The doctor told me dogs have mold bacteria, which could easily make their way into Won-kyoung’s lungs and kill her.”
Among five antibodies in the human body, IgE, IgD, IgM, IgG and IgA, Won-kyoung only has IgM, though the others are also essential to a normal immune system. A thin steel pipe, for IgG injections, has been inserted just below her left shoulder.
“Her body used to be covered with injections all over ― from her little finger to her ankle,” Ms. Moon explains. “To have the pipe is much better for Won-kyoung,”
With this gap in her immune system, even a trace amount of bacteria from a dog can land the girl in the hospital for weeks. So she takes LaaLaa everywhere she goes ― to the market and on evening strolls with her mother.
“Some people ask me if it’s O.K. to cast Won-kyoung loose like this at home, saying Won-kyoung should be safe and sound in a sterile hospital room...Well, I see the point, but I don’t want to ― not because I’m not worried about my daughter. If Won-kyoung is to live a short life, I want it to be full of happy memories of the real world.”
Even so, Ms. Moon must always be ready to bring Won-kyoung to the hospital, a place Won-kyoung is now fully adapted to. Won-kyoung looks like any typical 5-year-old most days, but she can suddenly become ill. At these times, Won-kyoung and her parents must spend several weeks ― or even longer ― at Seoul National University hospital.
It’s a constant cycle of hospital to home to hospital. Last year, Won-kyoung was hospitalized in March, May, July, September and October. This year will probably be similar, Ms. Moon says.
As no cure exists, treatment is far from adequate. With her feeble immune system, Won-kyoung is susceptible to pneumonia and other complications. And nobody knows when Won-kyoung’s condition will become unstable.
Ms. Moon abandoned the thought of sending Won-kyoung to kindergarten long ago. “It makes my heart ache to think that she will never be able to enter a school, even though she’s so bright as a little girl,” Ms. Moon says.
Won-kyoung is indeed a smart, respectful young lady, who already knows how to surf the Internet and can recite the Ugly Duckling by heart. A tad fashion conscious, she delights in applying transparent polish on her tiny nails. “Mommy, I want to grow up fast and be pretty,” she says. When Ms. Moon counters, “Why, you want to have a boyfriend?” Won-kyoung wears an aloof look on her face. “Well, not at the moment, Mommy,” says she. “But later, yes. A handsome one.”
The first symptoms of this peculiar, rare disease appeared March 2002. Though she often had colds at that time, her mother dismissed them as part of normal childhood. One Saturday night, Won-kyoung wailed as her fever climbed to 39.8 degrees centigrade (103.6 Fahrenheit). At the hospital, doctors were at a loss to explain her malady. Only after visiting several hospitals, Ms. Moon finally heard the term IgM Syndrome at Seoul National University hospital.
The family had no history of the disease, which perplexed her parents. “I was at first overwhelmed with agony and pain, about to give in. But then, I saw Won-kyoung sleeping on her bed and thought I should be strong to keep her safe.”
Ms. Moon began to attend church regularly, which she says gave her a new attitude. But the disease has taken a hefty toll on the family life.
The family’s only wage earner, Won-kyoung’s father Shin Young-min, works as a mechanic; he is a long way from being wealthy.
A monthly average of 3 million won ($2,500) for medical treatment and medicine, which is not covered by health insurance, stings their modest budget. And Ms. Moon is too busy attending to Won-kyoung’s needs to take a job.
The experience has motivated Ms. Moon and her husband to brush off thoughts of conceiving another child. Says Ms. Moon: “All we want is a healthy baby, but I’m not confident at all now, seeing Won-kyoung.”
The specter of seeing her child die chills Ms. Moon. “If that kind of thing ever happens,” she says, pausing, “I’d like to leave the country and never return. I just cannot go on living in a land where my dear little girl met her untimely end.”
According to the World Health Organization, more than 8,000 incurable diseases exist among humans. In Korea, about 470,000 people suffer from 104 such diseases, according to Park Nam-gie, an official with the division of incurable diseases at the Ministry of Health and Welfare.
Park Me-hwee, with the advocacy group Korean Organization for Rare Diseases, says the central government’s policy toward diseases has been rather lopsided. “There are just so many people suffering from incurable diseases, but no decent research has been done yet.”
Ms. Park contends that a more scientific approach to incurable diseases is needed. “Just some amendment to health insurance should not be the end. For one thing, those who are afflicted with Lou Gehrig’s Disease, are plugged to several electric devices and are desperate for preferential taxation on electrical use,” Ms. Park says.
Ms. Moon also has qualms with the government’s policy. “I don’t understand why I don’t get any benefit paying for the costly medicine. The government pays for sick nurses and food expenses at the hospital, but that’s not something crucially necessary.”
Over at the Ministry of Health and Welfare, Mr. Park understands that more decisive action is needed. “At the moment, the government has identified eight incurable diseases for free medical treatment. But we are making progress to have more and more diseases get such benefits.”
The sun is about to set and it’s time for a stroll with Won-kyoung. Ms. Moon dresses up Won-kyoung and combs her hair. Asked what she wants to be when she grows up, Won-kyoung breaks into a smile and says, “I want to be a mother, just like my mommy.” Then she starts to run down the apartment hall pulling LaaLaa in the miniature plastic baby stroller. Ms. Moon, gazing at her daughter, speaks in a low tone so Won-kyoung won’t hear. “If only she could be,” she says.
by Chun Su-jin