The Boy Who Never Grew Up - Hsiao Hsiao-chin

"They call me a dwarf... no one wants to be my friend..."
"I want to climb up! I want to climb!"
He gritted his teeth and tried to climb the slide, but despite all his effort, he remained stuck at the starting point...

With a protruding sternum, deformed and weak hands, and O-shaped legs, he is mocked as a "dwarf" by others. In reality, he is the protagonist of another fairy tale – Peter Pan.

Due to the continuous accumulation of mucopolysaccharides in his body, he, like Peter Pan, cannot grow up. Despite this, he possesses an optimistic and helpful personality. With a fearless adventurous spirit, he conquers a challenging journey through life.

He is Xiao Xiaojin, a patient with Mucopolysaccharidosis Type IV.

Xiaojin, who is "small," loves to run, jump, and climb, but his bent arms swing weakly when he walks, and his protruding sternum often draws curious stares from others. All these "differences" stem from his rare disease—Mucopolysaccharidosis Type IV.

At 7 years old, Xiaojin is only 92 cm tall, appearing like a 2-year-old child. "He's only grown two centimeters from when he was 2 or 3 years old until now; he grows very slowly. As he ages, it will affect his internal organs because while his organs develop normally, his stunted bones will press on his heart and liver..."

Weak hands, relies on teeth

"He started developing flat feet and O-shaped legs, getting tired easily and prone to falling when walking." Due to the continuous accumulation of mucopolysaccharides in Xiaojin's body, not only are his leg bones deformed, but his corneas are also affected. "He probably has 300 degrees of nearsightedness and 200 degrees of astigmatism. His vision is much blurrier than an average person's, so he has to look very closely." No wonder his small face is already adorned with thick glasses.

However, what most directly affects Xiaojin's daily life are his small hands that cannot straighten. When the editor handed him a bag of candy, Xiaojin immediately put the whole bag into his mouth. It turns out that he doesn't have enough strength to tear open even a small packaging bag and can only bite it open. "His hands, feet, and sternum are already deteriorating. They weren't this bent before, but now they are severely bent. His shoulder joints are starting to weaken and sag. Daily activities like writing, dressing, putting on shoes and socks are all affected." Xiaojin's mother softly recounted her son's daily struggles.

Unwrapping snack bags, picking up cutlery... these seemingly simple actions are challenging for Xiaojin, requiring all his strength and still not always achievable. Let alone if he falls, he might not be able to push himself up and stand again.

"I'd cry just thinking about it before bed"

"The doctors at the hospital didn't even know about this disease; he was probably the first case in that hospital." Shortly after Xiaojin was born, his family noticed his protruding sternum but didn't pay much attention until Xiaojin was two and a half years old when his limbs began to deform and he stopped growing. His family then took him between mainland China and Hong Kong, determined to find the cause of his illness.

He was finally diagnosed with mucopolysaccharidosis, but that was four years later. "The whole family was heartbroken, helpless, and found it hard to recover. We cried for a long time when we first found out, and I would cry just thinking about it before bed."

Despite the sorrow, they had to suppress it, fearing that their tears would hinder Xiaojin's fight against the illness. "We never talk about his illness in front of him, and we don't cry in front of him. We try to live a normal life."

Missed the golden period for medication

However, the warm concern from others brought tears to his mother's eyes. "When some people show concern for Xiaojin, it breaks my heart. We take care of him very bravely, we don't say..." After a few seconds of silence, the mother, covering her face with her hands, couldn't utter another word.

Although there is an artificial enzyme available abroad that can slow down Xiaojin's degeneration, the annual medication cost of over a million is unaffordable for an average family. Fortunately, thanks to the persistent efforts of patient families, the enzyme was finally included in the Hospital Authority's drug list, and Xiaojin received his first trial dose last November. "Now that the application is approved, a huge weight has been lifted."

Unfortunately, Xiaojin has missed the golden period for medication, meaning that the deteriorated parts of his body can never fully recover. "If it had been available earlier and he had received the injections earlier, the deformities wouldn't have been so severe."

Hoping to overcome the "20-year curse"

Two years ago, Xiaojin underwent a high-risk cervical spine surgery, which greatly worried his mother. "The cervical spine controls the brain and limbs. The doctor was concerned that if a child plays or falls and compresses a nerve, it could cause paralysis... but the main nerves are in the neck, so any mistake would be very troublesome." Thankfully, the surgery was successful, and Xiaojin's recovery has been remarkably good.

But thinking about Xiaojin's future, how can a mother not worry? "Ultimately, we will grow old. How will he live when we're no longer around?"

Literature suggests that the average lifespan of mucopolysaccharidosis patients is about 20 years, but his mother chooses to believe that a miracle will happen to Xiaojin. "I don't think about how long his lifespan is; maybe deep down, I believe a miracle will occur, and he'll pass 20, then 30, then 40."

"No one wants to be my friend!"

"I put a lot of effort into caring for him, doing everything myself." Going to and from school, changing clothes, eating, and using the restroom, Xiaojin relies heavily on family help for many things, especially given his active personality. Every time they go to the park, he runs and jumps non-stop, requiring his mother to be on constant alert. "I don't feel comfortable letting him play with other children because there might be collisions when they play. So I have to watch him closely, fearing that if he falls, it might affect the surgical site." Ironically, how many children are willing to play with her son?

"They call me a dwarf! Nobody wants to play with me! Nobody wants to be my friend!" What also troubles his mother is her son's fragile heart. "Sometimes children laugh at him for not growing tall, and he comes to tell me. I explain to him that people don't know, so don't blame them. He gets sad and cries when he comes home, feeling like he has no friends."

On the day of the interview, when we talked about "friends" with Xiaojin, he, who had been giggling moments before, immediately frowned, his eyes reddened as he nestled behind his mother. Large tears fell onto her shoulder, as he avoided this sensitive "sore spot."

Attending a special school boosts confidence

Fortunately, he has an optimistic personality and has learned to protect himself. "When he plays with others, he'll say, 'I'm sick, don't bully me, don't push me.'" However, his mother hopes he learns to face it positively. "I teach him that even though you're sick, you need to be proactive. Don't expect everyone to accommodate you just because you're sick."

"He has a bit of an inferiority complex. When he was entering primary one, he envied his classmates who went to regular schools. I told him he couldn't..." Choosing to enroll Xiaojin in a special school initially made him uncomfortable, but looking back, his mother firmly believes it was the right decision. "When we got to the special school, I told him, 'See, there are many children in wheelchairs. You can walk and run, so you can take care of children in wheelchairs.' When he comes home, he'll say things like the teacher praised his dictation, that he did well in reading, or that he got many stars; sometimes he even says he's the only one in the class who knows something, which makes him very confident and much happier in school."

Care is the best remedy

"Sometimes he comes over and gives you a kiss, sometimes he says something to coax you, and then you forget how hard it is. Seeing him so happy is comforting." Although young, Xiaojin is sometimes more considerate than adults. "Sometimes he's quite thoughtful; if he knows you're sick, he won't make you carry him. For example, now that they're installing an escalator at school, he said he really wanted December (last year) to pass so the construction would be over and they wouldn't have to walk so far around, which would make it less tiring for us."

While his occasional mischief can vex his mother, every heartwarming gesture from Xiaojin fills her with the strength to carry on. "I most wish for him to grow tall like a normal child, and I hope society pays attention to this rare disease, refrains from discrimination, and provides more resources for them. They also desperately want society's attention, care, and help."

Simple acceptance and care are the "most direct treatment" for children with rare diseases.

Are you willing to show a little less discrimination and a little more love?

Source: Hong Kong Mucopolysaccharidosis & Rare Genetic Disease Mutual Aid Group

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