Chan Tze Kin (15 Years old)
Duchenne’s muscular dystrophy
Tze Kin seemed like any other adorable baby when he was born. But at just six months old, everything changed. What started as just a bout of diarrhea quickly turned into every parent's nightmare. The doctors found that his liver enzymes were through the roof, and at first, they thought it was hepatitis.
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Tze Kin's parents were super worried. They took him from one specialist to another, ranging from hepatology to neurology. But no one could figure out what was wrong with Tze Kin. He was too young for muscle biopsies or DNA tests available in Hong Kong, which made things even trickier.
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Desperate for answers, Tze Kin's parents looked elsewhere for help. They searched in Mainland China for answers, but still couldn't find any answers. When they finally came back to Hong Kong, they rushed Tze Kin to the ER, hoping someone could finally tell them what was going on.
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It wasn't until Tze Kin was a year and a half old that they learned that Tze Kin had Duchenne muscular dystrophy, a disease that causes muscles to waste away. The doctors told them that patients with this condition usually only live to about 18.
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It was heartbreaking. In just 18 months, Tze Kin's family had gone from the joy of a new baby to facing an uncertain future.
Home Visit - Tze Kin
Volunteer Team / Dreams Come True
Despite facing a challenging diagnosis, Tze Kin's family is focusing on making Tze Kin's dreams come true. They shared a plan to form a volunteer team with Tze Kin, who recently had the opportunity to visit the MTR and experience his dream of being a train conductor. The family hopes to extend similar experiences to other children with rare diseases, allowing Tze Kin to lead a team and make a positive impact on others' lives.
Planning for One's Future
When we discussed planning for the future, I was struck by the family's optimistic approach. Given Tze Kin's condition and limited life expectancy, Tze Kin and his family think optimistically about his future. Tze Kin focuses on his strengths rather than limitations, continuing to play and listen to his favorite music and often participating in community service trips in Hong Kong and abroad.
Tze Kin's Strengths
Tze Kin's mother spoke warmly of Tze Kin's strengths. She described his remarkable empathy and ability to understand others' perspectives, even when he disagrees. She noted his tendency to internalize his emotions to avoid hurting others, which reveals a lot about his character.
Tze Kin in his Mother's Eyes
Tze Kin's mother described Tze Kin's warmth, charisma, and infectious smile as his greatest qualities. She sees in him a genuine charm and deep appreciation for others, and an individual who is always eager to learn and grow.
Grateful for those who have helped me
Throughout our conversation, the theme of gratitude was prominent. Tze Kin expressed how fortunate he feels to have had support at every stage of his life, especially his family and friends who have always supported him.
Learning music theory, hoping to convey resonance through music
I was intrigued by Tze Kin's interest in music theory and his love for music. He uses music to evoke emotions and express his feelings
Dreaming of meeting Elon Musk
Tze Kin dreams of meeting Elon Musk one day. He admires Elon Musk's work and the potential of innovative technologies to benefit people with health conditions like himself.
Conversations in the hallway... Mom's expectations
Tze Kin's mother shared her adjusted expectations due to Tze Kin's illness. She believes that he should explore different activities to broaden his perspective on life to reflect a balance of realism and optimism to characterize her family's approach to living with Duchenne Muscular Dystrophy.