YY (16 Years old)
Spinal Muscular Atrophy
YY's parents started noticing something wasn't quite right when she was only 4 or 5 months old. Babies start grabbing at things and sitting up, but YY was having a tough time with that.
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Her mom and dad watched as she struggled to control her hands. When they'd sit her up, she'd fall over, and she couldn't pick herself back up. Instead, she'd sort of flop her whole body around when trying to grab things.
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At first, they thought maybe YY was just a late bloomer. They took her to several doctors, but everyone kept saying it was probably just a developmental delay that wasn't worth worrying about. But deep down, despite what doctors had told YY's parents, they felt like something wasn't quite right.
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YY even had her brain scanned, hoping for answers, but everything came back normal. It wasn't until one visit to a government hospital after consulting many other doctors in Hong Kong that things started to make sense. The doctors there took one look at YY and said that she could potentially have spinal muscular dystrophy​
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Her parents started researching on the internet to find answers and learn more about SMA type 2. As they continued to read about it and learn of the condition's symptoms, their hearts sank. Everything fit - it was like reading about YY on the screen.
​By the time YY had turned one, they had their answer. It was difficult to face the truth, but at least now they knew what they were dealing with.
Home Visit - YY
YY's Hobbies
YY is passionate about drawing, and she is always actively improving her art skills, recently with the help and guidance of online teachers. YY naturally has a competitive spirit and loves to showcase this characteristic playing video games. She loves playing PUBG, an online game, competing with other players online from all over the world. YY doesn't let her condition hold her back from enjoying life and loves to go out with her family, watching movies and dining out together
Things I Really Want to Do
YY's eyes lit up when her mom mentioned amusement park rides, especially roller coasters. It was bittersweet to hear this, knowing that her muscular atrophy makes such experiences impossible. Her mother explained the reality of YY's condition of gradual worsening with no chance for improvement given the current treatments available. They're hoping for a medication that could at least stabilize her condition and prevent any further decline. Currently, YY can still sit up to eat, but many individuals with similar conditions eventually struggle to sit upright and eventually require feeding tubes.
Feelings Before and After Diagnosis
YY's mother opened up about the emotional journey that her family went through following YY's diagnosis. The moment of diagnosis was particularly hard - YY's mother felt as if all hope had vanished. With no one around who had experienced this rare disease, their whole family felt completely lost. What stood out most was YY's mother's resilience - she understood that she had to maintain a positive outlook for YY's own personal wellbeing. YY's mother tried her best to start worrying less and started facing each challenge one day at a time, step by step
YY's Personality
YY's personality shines despite her rare disease. Her mother shared a story about YY's positive attitude. When some children at a movie theater once found her wheelchair amusing and started laughing at YY, YY responded by telling her cousin to "Just ignore them." YY doesn't let other people and their opinions affect her, and she stays unfazed by others' negative comments about her.
Does Mom Blame Herself?
YY's mother admitted to sometimes wondering why YY had to be so unlucky to have a rare disease - a very human reaction to such a challenging situation. She described feeling resentment at first, struggling with a blank mind about how to cope with the whole situation. But now, with YY at 16, the family has gradually adapted, through facing many challenges, to learn how to manage YY's care effectively.
How to Face My Daughter's Illness
Accepting YY's condition was far from easy. When YY was first diagnosed, her mother admitted to using work as an escape and as a way to numb her overwhelming feelings.
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But as YY started to grow up and began first grade, her mother's perspective began to shift. She saw YY accomplishing things she never thought were possible - like learning to drive an electric wheelchair at such a young age. It was a powerful moment of realization that her daughter's life, while different from many other children, was full of potential.
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I was particularly touched by the story of YY participating in bocce ball at school. Not only did she compete in competitions, but she also won awards! YY's mother confessed that initially, she thought YY had no skills and abilities, but these achievements opened her eyes to YY's many hidden talents, such as her drawing skills. This shift in perspective was crucial in helping YY's mother focus on YY's strengths and how to best support her daughter.
Experiencing Two Near-Death Situations
Our conversation took a somber turn when we discussed some of YY's near-death experiences. YY's doctors had recommended a feeding tube due to YY's illness which affected her lungs and made eating really difficult. Even though YY was very young at the time, she expressed willingness to undergo the operation if necessary, which gave YY's parents some clarity during such a difficult time.
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Fortunately, YY's swallowing improved, avoiding the need for a feeding tube. However, she did require spinal surgery - a risky procedure that YY had to go through because of her condition's impact on her lungs. YY went through a grueling two-month hospital stay.
Thinking About the Future...
YY's mother shared her thoughts on the future: she just wants to be able to care for YY until the end. It's very moving to hear something like this, but YY's mother's words encapsulate the love and commitment she has facing whatever life throws her family's way.