‘Be alive’: Hongkonger with muscular dystrophy turns 18, against all odds
Celebrating one’s 18th birthday is not typically a poignant occasion, but for outgoing Hongkonger Chen Tsz-kin, adulthood began last week with a mixture of excitement and anxiety. At 18 months old, Chen was diagnosed with Duchenne muscular dystrophy, a genetic condition that causes muscles to weaken over time. Doctors told his mother, Michelle Li Yuan-feng, that people with the incurable illness…
Turning 18 was not an ordinary milestone for Chen Tsz-kin, a Hongkonger with Duchenne muscular dystrophy. Diagnosed at just 18 months, the incurable condition causes muscles to weaken over time, with an average life expectancy of 18 years. His mother Michelle Li Yuan-feng was told that her son's life would end at 18, marking the end of one phase and the beginning of a new one.
On October 20, Chen expressed his excitement and anxiety about this new chapter in his life. He was anxious about the unknown challenges that lay ahead and the need to be well-adjusted to face them. The past year was marked by a respiratory syncytial virus infection that left him in intensive care, a terrifying moment he described as the worst of his life.
Despite the adversity, Chen has pursued extraordinary experiences, including visiting the highlands of Kyrgyzstan, the Gobi Desert, paragliding, and diving, all with the assistance of volunteers. With his muscles deteriorating, Chen has lost his ability to walk, use a wheelchair, or hold a cup or chopsticks, requiring a back brace due to scoliosis.
His emotions have fluctuated as his body changed, but he has learned to accept and plan for his future. Chen has contemplated his views on death and his wish to leave a legacy for his family. He had planned to donate his body for medical research but his mother found the decision too difficult to accept. On his birthday, Chen celebrated with friends and volunteers who had accompanied him on his adventures.
His mother, who helped him throughout his life, planned a trip to Venice for Chen, pending his health. Chen's ultimate goal is to become a social worker, though he acknowledges the challenges ahead. Chen simply wants to be alive, embracing each day and the possibilities it brings.
Written by urgent.news from South China Morning Post's reporting — not their text. Machine-written — may contain errors; check the original before relying on it.
