Sydney-based Japanese mum Ryoko Tacadena has a 3-year-old son, Shinji (next to Ryoko), who has a rare genetic disorder called KAT6A Syndrome. Source: Ryoko Tacadena
The symptoms of KAT6A Syndrome are different depending on the person. For Shinji's case, he needs support for transport, feeding, and communication.
Shinji was very weak when he was born and had to stay at hospital for two months to go through a number of tests to figure out what was going on inside his body. A large scale DNA test had to be conducted and Shinji's DNA was checked one by one. It took a year to get the full result. He was diagnosed with KAT6A Syndrome.
"It was a difficult thing to do for a young baby, taking lots of blood from his arms. There was no nurse who could carry out this task, so we were sent around among hospitals", Ms Tacadena said.
Shinji is still unable to walk nor speak and has to be fed through a tube in his stomach.
"You can't tell his disability from his appearance. Some people look startled to see a 3-year-old is still crawling. They get surprised simply because Shinji is doing things they don't think normal".
"When I was a kid, I was scared of people with disability, because they are different. So I wish there are more opportunities for people to know about Shinji's conditions and his disability", Ms Tacadena said.
In the ausdio, Ms Tacadena explains Shinji's conditions and shares her experience.
Inclusive Education
Shinji is 3 years old and recently started attending a kindergarten. Thanks to public funding, the kindergarten could employ extra staff to support Shinji and support the inclusive class.
"Shinji loves teachers and friends. I really appreciate it. I always look forward to seeing Shinji's growth after a day at the kindergarten."
