CHANGCHUN: Zhao Ziqi is less than 3 months old and constantly runs a high fever.

The tiny baby cannot lose the heat from inside his body because he has no sweat glands.

Wu Huayan sometimes has to put her baby into an icebox to prevent his temperature rising too high. [China Daily]

"His temperature once reached as high as 42 degrees," said Wu Huayan, the baby's mother, cradling her son in her arms as tears streamed down her face. "He is too little to speak about his pain, and the only way to alleviate it is by crying."

Five experts from Changchun Children's Hospital in the capital of Northeast China's Jilin Province were consulted. Their diagnosis was hypohidrotic ectodermal dysplasia (HED), a congenital disease also called Christ-Siemens-Touraine syndrome.

According to www.webmd.com, HED is a rare, inherited disorder that belongs to the group of diseases known as ectodermal dysplasias. Ectodermal dysplasias typically affects the hair, teeth, nails, and/or skin. It is a disease whose full presence is generally shown only in boys; girls may carry the gene also, but they generally don't display all the symptoms boys do.

"Only one in 100,000 people or even one in a million is born without sweat glands all over the world," said Li Lihong, vice-president of the children's hospital, who was in charge of the consultation. "I've seen only one other person with similar symptoms, in the 1970s.

"As far as we know, up to now there are no effective methods to cure this kind of disease. All we can do is put the boy into water at normal body temperature (37 degrees) to alleviate his pain."

Zhao Huaiming, the boy's father, recalled that little Ziqi first began to run a fever when he was 12 days old.

"He kept on crying the whole morning that day; we really didn't know what happened," Zhao said. "My wife took his temperature, and the mercury column suddenly soared up to 42, and then the thermometer bulged out.

"When we got to the hospital in our town, Ziqi began to show signs of a coma. We kept watch on his bed for six days and nights until my little son finally woke up.

"However, after that, no matter what kind of medicine he took and whatever methods we used, his temperature always stayed above 38 or 39 degrees."

At home in their small town in neighbouring Liaoning Province, the couple tried all the methods they could think of to try to cool the baby down, such as wrapping ice in a handkerchief and putting it under his neck, putting frozen purified water in his armpit, and even putting the baby into the icebox.

The financial burden has already been great. The parents have sold their house and borrowed money from relatives. Ziqi is the couple's second child. Their 3-year-old daughter is living with her grandmother to help save money.

"We visited all the large hospitals in Changchun and spent all of the 50,000 yuan (US$6,250) within two months," Wu said.

She also said she was worried by one piece of advice the couple received.

"The doctor in my town told me to make funeral arrangements for my son," she said. "He tried to persuade us not to waste money and time to cure a baby with this kind of disease.

"But he's my son. I would give up only when there is no hope left."

Strangers have shown their kindness to help the family. Some have offered home-made remedies.

But the battle seems insurmountable. Hot weather, hot locations and places near chemical odours all pose big threats to Ziqi. And the more nourishment he takes in, the more heat builds inside his body, thereby causing him more suffering. Therefore, his parents have to control the quantity of food he eats.

Experts have also told the couple that because Ziqi has been exposed to disease, his organs are sure to be affected. He won't have teeth and probably very little hair. In addition, his brain and his constitution will all grow slowly, and he'll be extremely prone to disease.

Wu's plea is understandable.

"Anyone who has the experience to treat this kind of disease or can provide us with effective methods to cure my son, please help us," she said. "Please."