KOTA KINABALU: Like many children, Rayce Low Rok Chun loves outdoor activities, games, building things, and is a fan of robots.
When he was younger, he loved running around and playing badminton but could not understand why he was always slower than other kids his age.
“I couldn’t play badminton well because I couldn’t run fast, and the others were usually very quick to catch and hit the shuttle,” he said.
In 2018, at the age of eight, Low received an answer when doctors diagnosed him with the muscular disorder Duchenne Muscular Dystrophy (DMD).
“Most of the time, I don’t really think about my condition. I just try to think positively and live like how I used to, just with a wheelchair now,” said the 13-year-old from Semenyih, Selangor.
However, he admits that sometimes he feels sad and hurt when some of his schoolmates make fun of him and call him ‘wheelchair boy’.
Asked about his wish for himself, the boy of few words simply said he wants to be cured.
Low is with his 51-year-old parents, Alyce Tan and Davien Low Bun Him, in Sabah for the Coalition Duchenne Mount Kinabalu expedition.
Though they did not join the climb to Mount Kinabalu, they stayed in the city for other activities and to showcase their newly purchased wearable robotic exoskeleton that helps Low stand and walk as a form of therapy and muscle rehabilitation.
His mother, Tan, said she had been trying hard to find information on ways to treat and promote muscle movements to slow down muscle regression.
“When I saw this exoskeleton video on social media, I immediately reached out to the owner and the Chinese company that builds it,” she said.
The man behind Rayce is Sun Qinglin, position is engineer from RoboCT Hangzhou China
With this, they can now help Low walk and exercise to slow down his muscle degeneration.
Before this machine, they had another device to help Low stand, but it was heavy and required a lot of energy from both the carer and the patient to put it on.
Davien was the one who had to manually prop the device and put it on his son, often injuring his back muscle in the process.
“I am also not young, so with this new robotic device, it helps me too because I do not have to strain my back putting it on my son,” he said.
Now, apart from caring for Low, both parents are also working closely with non-governmental organisations and families from Malaysia and overseas to search for a cure.
“We hope there will be a cure for DMD for my son and all the other patients waiting to be treated in this lifetime,” said Tan.
