VietNamNet Bridge – For the Bissky-Dziadkyk family, the four-month trip to Southeast Asia in 2008 was the beginning of a lifetime journey that so far has taken them to 16 countries, where they have spoken to families and children with cerebral palsy in the hopes of inspiring them.

Laverne Bissky (right) with 17-year-old Kasenya (left), who lives with both cerebral palsy and diabetes, meeting children in Vinh Long Province in August. This year, the family travelled for two months in Viet Nam to meet Vietnamese families who have children with cerebral palsy.

"Even though we have a child with a disability, we were extremely naive about the lives and conditions of children living with disabilities in this part of the world," said Laverne Bissky, executive director of No Ordinary Journey Foundation.

The idea for the foundation emerged from their experience having a daughter living with cerebral palsy and diabetes.

"Despite the challenges that we realised we would face travelling with a wheel-chair user, we had always vowed that our 12-year-old daughter Kasenya's cerebral palsy would not interfere with our passion for travel," Bissky recalled. But their journey went far beyond a family vacation.

In September 2008, the family started volunteering at a Vietnamese orphanage run by Buddhist nuns in Hue with the help of the city's Office of Genetic Counseling and Disabled Children.

Bissky said that while Kasenya participated in normal volunteering activities such as washing desks and cleaning classrooms, she noticed that the Vietnamese children with special needs were spared from chores and ate separately from the other children.

The family was anxious to learn more about the condition of kids with diabetes in Viet Nam. They also met with parents of children with cerebral palsy in HCM City with assistance from the rehabilitation department at the city's Children's Hospital that year.

"Throughout the morning, it continued to puzzle me why the parents cried when they met us," Bissky said. "At the end, our interpreter explained that in Viet Nam there is still a stigma attached to having a child with a disability. Our family was not ashamed. We went with the expectation that Kasenya had the right to fully participate in everything we did."

During a trip to southern Tra Vinh Province, Bissky said she met a 10-year-old Vietnamese boy with cerebral palsy who had no wheelchair and lived in virtual isolation.

When they got back to Canada, the family found a used wheelchair and planned to give it to that boy. But they found out later he had already died.

The incident sparked them to initiate the foundation, which aims to provide children with physical disabilities with services they need. This year, the family spent two months in Viet Nam giving talks to parents about managing disabilities such as cerebral palsy.

A recent session in Dong Phu Commune Health Centre in Long Ho, southern Vinh Long Province, was attended by 15 parents of children with the disability. During the session, they learnt that children with cerebral palsy could listen and comprehend well enough to attend normal school.

Tran Van Thang, a local villager, was taken aback at this news. He said he was surprised to hear that Kasenya was an 11th grader at a normal high school.

Bissky explained to another mother how she could help her child straighten her back and drink water on her own.

Two years to chew

She told the Vietnamese families that Kasenya had spent two years just learning how to chew gum, and that parents should believe their children not only could learn but actively wanted to learn.

At the end of the session, Kasenya asked her mother to help her deliver a letter she had written to the parents. In the letter, she told them to "look for the little signs your kids give you that tell you they love you" and include the kids in daily activities.

Bissky said that despite the cultural and language differences, the couple felt a connection to the Vietnamese parents due to their common life experience.

Doctor Nguyen Quang Hien, director of Hue Nursing Care and Rehabilitation Hospital, said that seeing a child with cerebral palsy reach 11th grade gave the Vietnamese parents hope.

Doctor Yen Thanh Mac, medical advisor to the No Ordinary Journey Foundation, said the foundation was also hoping to change parents' negative perceptions of the disability by avoiding using the term "bai nao" in Vietnamese, which translates as "brain paralysis", and replacing it with the international term cerebral palsy, which emphasised the difficulties in muscle movement and coordination.

David Dziadyk, 54, Kasenya's father, said that while a family environment provided the best conditions to raise children with disabilities, many families in remote areas of Viet Nam had to send them to centres due to financial difficulties or lack of awareness.

During the family's two-month journey to Viet Nam, which ended in August, they met over 200 children in hospitals, homes and orphanages throughout the country and laid the groundwork for the No Ordinary Journey Foundation to be established in Viet Nam.

Next year, the foundation will send a team of cerebral palsy professionals to Viet Nam, with the goal of training primary care providers in remote areas to manage cerebral palsy. They hope to develop a model that can be used throughout Viet Nam and other countries.

Nguyen Thi Ngoc Tuyen, a mother from Dong Phu Commune in Vinh Long who attended one of the education sessions, said that many people who heard about her nine-year-old child's diagnosis said she was "waiting for death".

"I knew that my child could listen and understand," she said. "Listening to this mother, I learned I could help my child learn how to walk and perhaps even attend school in the future. Maybe things will get better."

Source: VNS