Mucopolysaccharidosis Boy - Chu Yat Long

●August 2026 Update: Long Long and his brother volunteer together

Nine years old, but the height of a six-year-old;
Having experienced a brush with death, he doesn't care about the saying, "Most only live to 20..."
He always says with confidence and clarity, "My name is Chu Yat Long, and I have Mucopolysaccharidosis Type VI."
"I am fearless!"

"If you face life positively, you'll always find a way forward!" Every time I meet Long Long, I look forward to his golden sayings. His somewhat precocious yet firm tone, coming from this child with a rare disease, brings joy and endearment.

Long Long, who loves singing, dancing, and broadcasting, has many hobbies but is shorter than other children his age. Due to a lack of a certain enzyme in his body, mucopolysaccharides accumulate, affecting cells and joints, leading to short stature and stiff joints. As a result, Long Long's spine protrudes and is somewhat curved inward, requiring him to wear a back brace to keep his spine straight; his fingers are also short and curved inward, making it difficult to exert force.

"Most only live to 20"

“It's harder to win than the Mark Six lottery, but we did!” When Long Long was 9 months old, a medical examination found that he couldn't sit upright like other infants, and his development was lagging behind normal infants. An initial orthopedic diagnosis indicated that his lumbar spine and chest bones were deformed, with several shorter spinal segments, and many birthmarks on his back. After repeated examinations, he was finally diagnosed with Mucopolysaccharidosis Type VI, with an incidence rate of about one in 210,000.

Their son was suffering from a serious illness, and then came the fatal statement, "Most only live to 20." What could the couple do besides "crying in each other's arms every day" and exclaiming, "We can't accept this!" The resilient child inherited strong genes from his parents. After crying and complaining, the parents bravely decided to break free from the shadow of the rare disease. "If we, as parents, don't face it positively, how can Long Long face his life positively?"

What we can choose is our attitude

Facing heartbreaking questions about the illness, the father never shies away. "We choose to face it optimistically, and we've always been honest with Long Long about his condition, the problems he'll face in the future, and so on, so he understands his situation clearly." Long Long listens quietly beside them, nodding and confidently saying, "Facing things positively will always lead to good results."

Clever and optimistic, Long Long is always saying heartwarming things, infecting everyone around him. Every time I meet him, I love to hold his small hands. His hands and feet are not flexible enough, making it a bit difficult to cut fruit, and his dad has to help him twist open water bottle caps. His dad says, "Daily life isn't a big problem, but because he's small and top-heavy, we have to be careful to prevent him from falling. He also needs to exercise more to strengthen his bones, so we take him to the park on holidays."

Brave to try new things, Long Long immediately demonstrated his "nothing can stop me" spirit, cutting fruit and folding clothes with his dad. This novice handled things methodically. "Actually, I've never done these things before." He took big bites of his "first creation," finding it exceptionally delicious, and proudly offered it to the Lifewire team.

There's a cure, but it can't be used?!

Long Long's father actively learned about his son's rare disease, visiting Mucopolysaccharidosis associations in Taiwan and the United States to understand foreign treatment methods, and discovered that despair had not yet reached its end. There are two ways to treat Long Long: one is expensive medication, which provides the body with the necessary synthetic enzymes, but the medical cost is at least a million dollars a year; the other is surgery, involving umbilical cord blood transplantation, but the risk is extremely high.

"Because they received early medication, some foreign patients are already in their twenties, with physiques not much different from healthy individuals, and have even become doctors. This shows that timely medication can change the life of a child with the disease," the father said helplessly. "The medication is too expensive. How can an ordinary family afford it?! But the Hong Kong government doesn't provide any subsidies!" There is medicine, but it cannot be used! How ironic! "The medication needs to be evaluated by an expert panel from the Hospital Authority to see if the patient is 'worthy' of the medication. It is known that there is an unwritten rule that children can only use it after the age of 5."

However, the longer mucopolysaccharides accumulate in the body, the more difficult treatment becomes. Delayed treatment can lead to bone deformities and even damage to the liver and kidneys, causing them to enlarge. "If treatment is delayed for a few more years, the body will have already suffered significant damage, and even with medication, it will be difficult to recover, causing a great impact on the child."

A "choice" made under no choice

"It's like having a choice, but in reality, we were forced to take this path." Due to Hong Kong's medical system, the father difficultly "chose" the only way out—to perform umbilical cord blood transplant surgery for Long Long, who was less than one year old at the time, hoping to prevent his son's condition from worsening.

Unfortunately, misfortunes never come singly. After the surgery, Long Long contracted a virus, causing his lymph nodes to swell and press on his trachea, making it difficult to breathe. He also developed severe edema and had to take medication for lymphoma to fight the illness. His father did not hesitate to stop working for 4 months to fully care for Long Long, who was at death's door.

Recalling the past, the tough and optimistic father shed tears but did not complain. "Actually, the doctors in Hong Kong tried their best to help us. It's just that the system is rigid, preventing children from getting early treatment and suffering high risks and pain."

Even at the height of joy, one must grit their teeth.

Long Long's condition did improve after the surgery, and the family believed they could extend his life and change his future. Little did they know... "The doctor estimated that in a dozen years, Long Long might reject the transplanted material himself, and his eyes, bones, heart, and other aspects might worsen, returning to his pre-surgery condition."

If given a choice, who would bet on stakes they couldn't afford to lose? Mr. Chu has no regrets about choosing the surgery, refusing to wait idly. Long Long, at such a young age, seems to understand things more thoroughly, always downplaying his difficulties and discomfort, or wisely giving adults a wake-up call. When asked if his body hurts, Long Long says, "Everyone encounters difficulties; there's always a way forward... When Daddy and Mommy hug me, they give me strength, a kind of power called love!"

"Which button? I want to take a picture!..." After all, he's just a nine-year-old child. Before the serious topic even concluded, Long Long saw the camera and couldn't help but "become the director": "Action! Cut! Mealtime!" He even curiously picked up the camcorder to film his dad and take selfies.

His optimism and open-mindedness support his parents through every challenge, "reducing a lot of stress for us." For his son's future, Mr. Chu's expectations are simple: "I hope he can live a peaceful and happy life, just like the name I gave him, without enduring too much suffering, growing up normally, and being able to take care of himself."

Preparing for the desert race

On the day of the interview, Zhu Yi Long was six days away from his trip to the Gobi Desert. Arranged by Lifewire, he became one of the child patients sitting in a unicycle, pushed by the polar runners, his elder brothers and sisters, across the Gobi. After months of training, Long Long had mastered the technique. "The cart can easily tilt forwards and backwards, and the runners can easily fall, so everyone can only run slowly and train more." He admitted that sitting in the cart on uneven roads felt bumpy, but he said he "wasn't worried about being tired." He hoped that through this event, he could encourage other children with rare diseases: "Let's face this together, okay?"

He was diagnosed with Mucopolysaccharidosis Type VI at one year old, with an incidence rate of only one in 210,000.
He thought he was lucky because there were drugs and surgery for treatment,
The result was that there was medicine but it couldn't be used;
The surgical outcome was also not as expected,
But his family believes: positive attitudes always lead to good results!