Young victims of cerebral palsy crying out for help

Cerebral palsy, a group of disorders that affect the brain and nervous system, is taking a huge toll on Chinese society, experts say, and families with CP patients are in desperate need of help.

That was the consensus during the opening ceremony of a campaign held in Beijing on Dec 12 to raise social awareness about the disease.

The campaign was initiated by One Foundation, China Philanthropy Research Institute of Beijing Normal University, and other nonprofits.

The groups made an appeal for social-welfare legislation that would help families coping with cerebral palsy.

Caused by damage to the motor-control centers of the developing brain, the condition can occur during pregnancy, delivery, and in small children under 3.

It will severely damage a patient's social function if not diagnosed and treated early.

Doctor Dolphin

China is estimated to have about 6 million cerebral-palsy patients, including up to 1.2 million children under 6, according to the campaign organizers.

About 70 percent of these children live in remote and poverty-stricken areas, meaning they have little access to treatment and rehabilitation training, and are easy targets of social stigma, experts say.

Treatment and rehabilitation are very expensive - up to 10,000 yuan (about $1,600) a month in China - and are often excluded from medical insurance coverage, according to Shang Xiaoyuan, a social development and public policy researcher with Beijing Normal University.

Studies show that a patient with the disease will cost the family at least more than 500,000 yuan in treatment in his or her lifetime.

In addition, the main care-givers or guardians often have to devote most of their time to taking care of children with cerebral palsy, and may sometimes have to quit their jobs.

This often reduces the family's total income and aggravates its financial burden, according to Chen Hongle, an executive with One Foundation, a charity initiated by celebrity actor Jet Li.

Zhang Dakui, 31, says he always feels grateful to his parents and stepmother for his recovery.

The doctoral candidate in computer science with the Beijing Institute of Technology developed cerebral palsy after an infection in infancy, and lost almost all ability to walk and talk.