‘It won’t stop me’: Hong Kong teen battles condition to live ‘ordinary days’

For Hayden Yung Hok-yat, a 15-year-old Hongkonger living with Duchenne muscular dystrophy (DMD), going out in a wheelchair is like tackling an obstacle course. Wherever he goes, from bustling shopping centres and restaurants to serene country parks, he must make sure there is a functional accessible toilet that is unlocked – some are closed off to prevent misuse by those without physical disabilities. The city’s transport systems are largely accessible, but a smooth journey depends on an available wheelchair space, clear ramp access at the pickup and drop-off point and considerate passengers who make way for him, a rare occurrence. Unfriendly stares and intrusive questions about why he uses a wheelchair are common frustrations for the teenager. “People like asking why I’m still in a wheelchair when my younger brother is walking, but what does it have to do with me?” Hayden said with a wry smile on his face. “I hope people can better understand the needs of disabled people like me.” As the world marks the International Day for the Protection of Children on Sunday, Hayden said he hoped the community could foster greater inclusivity, embracing young people dealing with medical complexity and giving them equal opportunities to pursue their dreams. Children with medical complexity are those who have multiple chronic physical conditions and high healthcare needs. Social workers also highlighted a gap in services, saying the city could do more to safeguard the rights of these children, including offering specialised childcare and respite services to ease the stress of their carers. Eva Chui Yuk-ying, Hayden’s mother, said the challenges of going out meant fewer opportunities for family activities – especially ones attended by both parents. “Say we wish to watch the younger son play in a rugby game, but the wheelchair seat is on the ground but not in the spectator stand … It’s the same case with most cinemas,” she said. But requesting what they need, such as a dedicated space or a key to the accessible washroom, is not always comfortable for her. “We always wish to avoid appearing entitled, but after facing a barrage of obstacles, we can sound overbearing sometimes,” she said. Fortunately, a community support project run by the HKSKH Welfare Council that focuses on connecting families of children with medical complexity to services and information has made their life easier. She recalled the NGO helped to arrange a rare family photo in a studio, as most did not let in wheelchairs over fears the device would damage backdrops. The family also had the chance to experience play therapy, which can help youngsters process their decline in mobility and parents learn more about their child’s inner world. Chui understood that the life expectancy of DMD patients was shorter than the rest of the population – usually around 20 years – but the family recently decided to start discussions on the future, such as joining the queue for a spot in a care home and applying for public housing for Hayden. “In the past, both of us were clear that he would pass away before me, but now we are on a drug trial which feels like a glimmer of hope, though we don’t dare to get the hopes up too much,” she said. Hayden, meanwhile, was going all out for a life that was not defined by his condition. He currently has to return to the hospital at least three times a month to see 12 types of specialists. “DMD has made my life quite inconvenient, but I’m not letting it win. It won’t stop me from doing what I want,” said Hayden, who must also take a handful of pills every day. He said he had recently gained weight due to steroid treatment, but he was pushing his wheelchair and lifting water bottles regularly to get into better shape. He has also challenged himself to be more sociable, making more friends of his age, as he used to be more introverted out of fear of being discriminated against. With a strong interest in numbers, he said he hoped to study accounting as an elective in secondary school and become an accountant. But he may need to take an applied learning course offered by other institutions, as his special school does not offer the elective subject. Despite the limitations, Hayden said he was quite satisfied with his life. “I’m happy as long as I can live my ordinary days – going to school as usual and having some time to play video games every day.” Molly Chan Mo-ning, director of hospice care services at the HKSKH Welfare Council, said Hong Kong should do more to better safeguard the rights of children with medical complexity. The government could focus on childcare and respite services tailored to those children, and barrier-free play equipment, among other measures, she said. “A family-centric support model would be helpful because we observed that the well-being of the entire family could be affected when parents are exhausted from round-the-clock caregiving,” she said. “If a charter could be established, outlining the unique rights and needs of children with medical complexity and their carers – distinct from those of other children and disabled adults – it could pave the way for more tailored measures, policies and resources in the future.”

‘It won’t stop me’: Hong Kong teen battles condition to live ‘ordinary days’

.css-1c6uqr6{color:inherit;font-weight:inherit;font-size:inherit;font-family:inherit;line-height:inherit;overflow-wrap:break-word;}Hayden Yung finds ways to persevere with muscular dystrophy, but experts say targeted help is needed both for children and their carers

Hayden Yung finds ways to persevere with muscular dystrophy, but experts say targeted help is needed both for children and their carers