In many countries, parents of children with cerebral palsy often struggle to find information on how to support their children to improve functioning and independence. In this story, one parent describes her experience searching for information which led her to contribute to the community.

Nguyen Phuong Ha knew something was different with her daughter, Pika, soon after she was born in Ho Chi Minh, Vietnam in 2012. Her baby was born premature and found to have a brain haemorrhage three days after birth. In the months that followed, Phuong brought her baby at her own cost to many other doctors, but none offered support, guidance or a diagnosis. She searched for information but didn’t come up with anything. So, as a biology researcher working with a research institute, she began her own research. After 11 months, she suggested to a doctor that her daughter had cerebral palsy. The doctor agreed. But he could offer no support or a plan for treatment for her daughter. 

At that time in my country, there was not much information about cerebral palsy from public hospitals. And there was no support for parents,” Phuong said. “And because my daughter’s condition was so severe, they just said negative words.

With the dearth of information on cerebral palsy, and her many questions on her daughter’s health condition, she decided in 2014 to make a trip abroad to learn how children with cerebral palsy and their families were supported in other countries.