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Desperate parents, sick kids and neighbors who want them out

LIN Jianguo pulls down a cap to cover the waxen face of his three-year-old son A Jie who is nestled in his arms. "Hush, little one," he whispers. "Let's see if we can get in through the front gate."

Three months ago A Jie was diagnosed with lymphoblastoma, a kind of leukemia with a survival rate of less than 10 percent. Lin sold their house, his wife quit work and they moved from Quanzhou, a coastal city in Fujian Province, to Shanghai so the boy could get better treatment.

Many people like Lin, from all over China, come to Shanghai for their children's long-term medical care. They need cheap lodging near hospitals and many people rent rooms in roughly divided-up flats. This results in clusters of anxious parents with sick children.

Many neighbors object to what they consider possible death at their doorstep.

A Jie began receiving chemotherapy at the Children's Hospital of Fudan University on Wanyuan Road in Shanghai's Minhang District. The hospital was recently relocated from Fengling Road in Xuhui District.

Lin, a pharmaceutical company salesman, rented a room in Wangzu Xinyuan, a residential complex just opposite the hospital, to nurse A Jie.

Two months ago, however, Lin knew something was wrong. Each time he and his son entered the area, the front gate keeper would cross-examine Lin and ask which building and room was theirs. He gave the sick boy suspicious and hostile stares.

Not long afterward, a sign was placed at the entrance: "No Sick Children Allowed."

Lin was irate. He tried to negotiate, but failed. Now the family has to slip unobtrusively into the residential area through a small side door on the south side each day.

"This is absolute discrimination," Lin says angrily. "We families with sick children are already a disadvantaged group, but we are treated in such an unfair way. They have no right to stop us entering our legally rented room."

The property management company declined comment.

Lin is not the only one who suffers embarrassing interrogation. Almost every parent with an apparently sick child is stopped and questioned when they enter the main gate.

Wangzu Xinyuan is a relatively new neighborhood, opened around three years ago. But last year, the Children's Hospital of Fudan University was relocated from Fenglin Road to Wanyuan Road, just opposite the residential property.

Then many - no one knows how many - child patients and anxious parents from all over the country moved in. Many children need special, long-term treatment and some are waiting for beds.

Hospital officials say they receive around 20,000 patient visits a year, including 13,000 out-of-town patients visits.

Since many children are treated on a long-term, often out-patient basis, their parents need nearby lodgings where they can care for their children.

Thus, Wangzu Xinyuan has become an ideal, temporary home, and the accommodation business is booming, though many places do not meet building regulations.

Some owners divide their flats into several small rooms with wooden planks, and rent them to parents of sick children. A 150-square-meter flat can accommodate as many as nine families (parent of two and a child). A bathroom too is a "room," which can house even a family.

Prices range from 30-100 yuan (US$4.4-14.6) per day, much cheaper than nearby motels, where a double room is around 170 yuan a day, minimum.

Some impoverished families sleep on streets at night while their children stay in the hospital. Somehow, they manage to scrape together enough money for some treatment.

Lin shares a flat with other two families and a construction worker and pays 1,200 yuan a month in rent. As his son suffers from lymphoblastoma, the "king of leukemias" as the doctor told him, Lin and his wife plan to stay for at least a year.

"A Jie needs chemotherapy each month. An entire course of treatment is 12 months," Lin says. "We don't know what to do or where to go. Shanghai is our biggest hope."

Each month they spend nearly 20,000 yuan on the treatment, not including the nutritious food for the boy, and not including rent.

"We have to save each penny. The treatment is so expensive," the father says. A hospital bed costs 120 yuan per day but when the boy's condition is stable, Lin takes him to the flat and nurse him.

Another reason parents rent rooms is that they can prepare food for their children.

"His mother buys food from the nearby market and makes special dishes for A Jie every day," Lin says. The shared kitchen is small, but it is enough.

However, the sight of so many distressed parents and sick or dying children, some with respirators, coming and going has disturbed and infuriated the neighborhood.

They complained to the residents' committee, saying they worry their healthy children will be infected. Being so close to death is unsettling, some consider it bad luck.

"We also feel sorry for these unfortunate babies, but we're anxious too," says Li Fengmei, a proprietor in the neighborhood. Her daughter is going to give birth next month.

"I'm just upset. You know how it feels when you are strolling in the community and then bump into a sick, pale kid wearing a mask."

Safety and fire hazards are other concerns for locals.

"A flat is divided into five rooms with planks and the electric cords are trailing in a mess in the flat. It's very dangerous," says Li.

Resident Zhang Juping, 52, is also opposed to having so many sick children in the residential area.

"I was totally shocked and frightened one day," she recalls. "I guess the child died and his mother cried loudly the whole day. Everyone could hear her."

Zhang saw the child once. "He was around 12 year old, he had lost all his hair and he was extremely thin," she says.

"It's so pitiful, but no one can tolerate this kind of thing.

In response to complaints from residents, the residents' committee posted the "No Sick Kids Allowed" notice at the gate and ordered gate keepers to enforce it.

"They are so poor, but I have to keep my job," says gate keeper Geng Zhenjiu. He says that if he allows one sick child in (and is discovered) he will be fined 100 yuan.

"Children looking pale and weak, sometimes wearing a mask, must be sick. Their parents usually carry stuff like thermos bottles and lunch boxes," he says.

Despite the fine, however, Geng often turns a blind eye to those needy parents and children. "I tell them to get in from the side door," he says. "They are poor people."


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