It was a bright Autumn day in November 2000, when Khoa was born in the Central countryside region of Dai Loc. He had a regular birth and his parents were delighted with their chubby, smiley baby boy, who developed in all the regular ways until six months later in May 2001. He got sick and had a terrible fever, which developed into convulsions and spasms. As with many people in the countryside regions, his parents had no idea how to deal with this when it happened, except to hope that their little son survived. Which he did, but the high temperature and seizures had damaged part of Khoa’s brain and Khoa had developed Cerebral Palsy.
The terrifying thing about Cerebral Palsy is that it can strike a child at any time during the brain’s growth. This can be in the womb, during birth or up to around 3 years of age. It can generally be divided into Ataxic, Athetoid and Spastic Cerebral Palsy, or a combination of these. The variants of Cerebral Palsy are characterised by abnormal muscle tone (either too much or too little), poor co-ordination and balance, problems with motor skills and there may (or may not) be issues surrounding sensation, swallowing and speech. Khoa began to show symptoms of Ataxic CP, which meant that he had poor coordination and balance, and poor control over his movements. His speech as it developed was slurred and unclear, and he had poor fine motor skills. He could not walk, he could not grasp, he had involuntary tremors. None of his family, who were farmers, had any idea how to help Khoa, and so he spent his life up to the age of six simply lying on a bed, until he was sent to live at the provincial orphanage. This is the fate of many children with disability in Vietnam, where there is still poor understanding of disability and still less support, especially in rural or remote areas. A child with a disability can put a big dent in the household income of an already poor family by keeping a breadwinner at home as a full-time carer.
This sad event in Khoa’s life unexpectedly turned out to be the thing that saved him. For the Kianh Foundation was operating at the orphanage where Khoa was sent to and he was immediately enrolled into the Foundation’s physio and education programmes there. Like most people who suffer from Ataxic Cerebral Palsy, Khoa had normal cognitive ability and was exceptionally bright with a wicked sense of humour. The writer and artist, Christy Moore, whose life was portrayed in the film My Left Foot (based on the fact that he painted with his left foot, the only part of his body that wasn’t paralysed) is a great example of the determination and spirit embodied by many people living with Cerebral Palsy. Once he began to receive intervention, Khoa learned to walk and his speech began to develop. When the Kianh Foundation opened their own school in 2012, Khoa went there to study and his development accelerated even more. He became literate and numerate, good with computers, learned to ride a bike.
Khoa is now 19 and after graduating last year, became a teaching assistant at our school. He has a good rapport with the younger students and works in the Tiny Tigers Class, where the focus is on early numeracy and literacy; he also runs a Beginner’s English group for students in the mainstream class at the school. He has a 3-wheeler motorbike and regularly rides back to the countryside to visit his biological family, who never stopped loving him, but just never had the means to help him. All of his life, Khoa has encountered people who have just seen his unstable movements or his wobbly speech and thought that this was the whole story. These days, it takes them about three minutes of talking to him to be put humorously in their place.