Keeping cool a matter of life and death for sick boy

PHOTO: Keeping cool a matter of life and death for sick boy

SHANGHAI - Summer is the most difficult season for 12-year-old Hu Fengyi to endure.

Simply put, he can't sweat.

"We've taken him to many well-known hospitals in Shanghai and Beijing, but no one can cure this rare disease," said his mother Gao Lijuan.

Living in Hangzhou, Zhejiang province, where the temperature in summer often surpasses 35 C, staying cool is difficult, but critical. Hu has to drink water continuously to get the heat out of his body, and so frequently urinates.

Because of his genetic disorder, he must stay in air-conditioned rooms night and day.

Summer blackouts are a nightmare, and his parents have to bring him to nearby shopping malls and supermarkets where there is air conditioning.

"Once we stood in the sun for several minutes to get a taxi. My son almost collapsed," Gao recalled.

This year, the power supply bureau where Hu's family lives listed his community as a VIP client, like hospitals, whose power supply will not be cut.

"We have also collected 8,000 yuan (S$1,500) and bought them an electric generator so that we can make sure they will never experience a blackout," said Zhang Jun, a spokesman with the bureau.

However, being unable to sweat is not Hu's only problem - he can't feel pain either. "My son is very active. He often hurts himself without realizing it," said Gao, who is used to expressing the boy's thoughts and wishes as he is not able to communicate easily with other people.

Three years ago, a wound in Hu's right hand became infected and eventually the front joint of his index finger was removed.

"It was a painful lesson for us. Since then, we take him to the hospital immediately if he is wounded," Gao said. Hu was hospitalized twice in July alone.

Now she wraps Hu's arms and legs to prevent him from getting hurt.

Can't leave him alone

"I can't leave him alone"

After her son was born, Gao left her job to take care of him, leaving the family reliant on her husband's monthly income of 2,000 yuan as a factory worker.

"I want to find a job so that I can help to improve our condition," she said. "But I can't leave Fengyi alone. No one can take care of him like I do."

"Since he can't feel wounds, I have to check his body very carefully. To tell you the truth, I'm a little impetuous, but I'm extremely patient with my son," she said.

Gao cleans her son's room several times a day to reduce bacteria that may cause infections, and never brings her mobile phone into the room because she is afraid that the phone may bring bacteria from outside.

"Many people have tried to persuade us to have a second baby. But I won't," she said. "Children like my son need extra love from parents. I won't split my love with another child."

Bao Yifeng, a doctor with the orthopedics department in the Traditional Chinese Medicine Hospital of Xiaoshan district, is a witness to the parents' love.

"I would say the boy couldn't survive without the couple's love and care," he said.

"Gao never leaves her son alone. Even at night, she just keeps sitting beside her son's bed."

He said that Gao is an outgoing person and is responsible for communicating with the doctors about her son's condition, while her husband, who is a little shy, carries the boy on his back here and there in the hospital.

However, Bao said that they can't find a way to cure Hu's disease. "All we can do is take stopgap measures," he said.

Hu quit school three years ago due to his illness, and now he can't even walk steadily.

"What I miss most is that when he went to school, he could walk by himself and sometimes run," Gao said.

"I hope my son can survive till the day medical technologies are advanced enough to cure the disease. I'm looking forward to it," she said.

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