Child with muscular dystrophy – “Just let him live as long as he can”

“Mummy…” His mother hurries to come and fit the tube for him.
“Mummy…” His mother rushes to come and turn him around.
“Mummy…” His mother stretches out a hand to switch the TV channel for him while busily taking care of his younger siblings.
He is 11 years old, with normal intelligence, but an abnormal body.
“Do you know what disease you have?” The naive little boy answered with his slightly weak voice, “ I don’t know.”
All he knows is that he experiences all these - lying on the bed all the time with different tubes connecting him to a ventilator and entering his stomach through a gastrostomy and so on – just to survive.


Children’s daily life is running and jumping happily in the park and playing with their classmates with no worries. Yet to Lok Chun-Ting who suffers from muscular dystrophy and neural diseases, these are all unreachable luxuries. When he was as young as a-few-year-old, he had already experienced two medical emergencies and could only move his hands, fingers and head. Ever since he was six, he has been connected to a ventilator via a tube inserted through his throat. For all those years, he has to lie on his bed as if imprisoned. Even when he bathes, he needs to bring along his ventilator.

He is optimistic. He loves watching cartoons and talking with others. Being visited by the Lifewire team, he was stiff and shy at first, but soon started waxing lyrical. With a tube inserted through his throat, his voice remained weak no matter how hard he tried, but this did not hinder his curiosity. He kept asking, “Are you staff from the television station?” There was always an innocent smile on his rosy cheeks.

He is also smart and proactive. When he saw our photographer taking photos, he curiously reached out his hands to try. However, he did not have the strength to even click the shutter, not to mention to hold the heavy camera. The photographer needed to place his hand over Chun-Ting’s little finger and click the shutter with Chun-Ting…

While Chun-Ting’s intelligence grows, his body condition keeps deteriorating. Such relentless suffering is unimaginable to others, even the closet ones, but continuously torturing Chun-Ting’s family. “I want to buy a camera! I want to buy a camera! Mummy…” Chun-Ting kept yelling and begging after clicking the shutter, “Don’t go! I don’t allow you to go…” His request sounds unreasonable but is indeed a type of emotional transference or a way of emotional venting.

Being bedridden, Chun-Ting could only watch his younger siblings jump and play. Afterall, he is only a child. His craving yet desperate stare was heart-wrenching. He kept asking the team to role-play with him, wanting to play the role of a world-saving superman. Every time he succeeded, he laughed excitedly and requested the team to repeat the game. He enjoyed it so much that he never got bored of it.

 

Abnormality observed at half years old - Nobody could help

“I really wanted to die the moment I knew this!”

“Why me? Was it because I had done something wrong?” She used to feel gloomy towards Chun-Ting’s disease. She thought there was no way she could make any difference no matter how hard she tried. There would not be any miracles.

“Everyone is heartbroken, but we don’t talk about it because nobody wants to face such a fact. We all want to escape from it.” Chun-Ting’s mother, father, grandmother and younger siblings seldom talk about his illness because they are afraid of hurting each other’s feelings. This rare disease is like a time tomb buried deep in the heart of Chun-Ting’s mother. Having no one to confide to, she alone bears the stress coming from the worry that one day, Chun-Ting’s siblings will also suffer from the disease like their elder brother…

 

Intense discrimination - “He’s lame!”

Recalling the past, Chun-Ting’s mother found it full of unpleasant memories. The most striking experience she could summon up was that once, Chun-Ting’s classmate yelled, “He’s lame!” when Chun-Ting went to school. These three simple words broke the mother’s heart but she could not blame the naive child. Every time she goes out with Chun-Ting, the passers-by look at them. Often, they also hear other children asking, “Why does that kid sit on a wheelchair?”

Misunderstandings are also hurtful. Back in the time when Chun-Ting was small and the family had not bought a wheelchair for him, his mother brought him out with a baby stroller, “The drivers always asked us to fold the baby stroller. I explained to them that I couldn’t do so because my child couldn’t move around freely by himself, but they didn’t listen. They won’t set off unless I folded the stroller… It was really a struggle. He (Chun-Ting) had already had a big body size back then. I had to carry him with one arm and fold the stroller with another while holding many other things.” Experiencing various inconveniences with no understanding from others and being always scolded by drivers and looked at discriminatively, the mother felt strongly that she was wronged.

 

Up to twenty times a night - Impossible to sleep

Throughout the whole-day interview, we could see Chun-Ting’s mother closely taking care of him non-stop: sucking out sputum, turning him around, bringing him to the toilet, and stretching his limbs. She repeated these actions again and again, on and on… She used to be an office worker who loves working and enjoying Me Time. Yet given Chun-Ting’s situation, she had no choice but resign and take care of Chun-Ting and his younger siblings full-time, “I want to work. I like working very much. But it’s all gone. I can’t go to work!”

High medical expense for a family with seven members

Apart from effort, money is also necessary to take care of a rare disease patient. Every day, Chun-Ting uses medical equipment and consumes many medical supplies such as milk powder, milk storage bags, sputum suction tubes and machine, humidifier, filter paper… The milk powder alone costs around two to three thousand dollars per month, “He drinks six boxes (of milk powder) each month and five bottles (of milk) each day. Sometimes when he’s hungry, he has six bottles.” With his father being the only breadwinner, the high medical expense further burdens the family financially.

 

Chun-Ting’s father works in the renovation industry. At the height of the pandemic, he almost had no work to do, “Around the Lunar New Year, he didn’t have work for nearly a month… Sometimes he doesn’t have enough work, but he needs to support so many people in the family (seven family members including the grandmother) and pay for the domestic helper. It’s stressful.”

 

Every time a renovation project is finished, the family has to start worrying about their livelihood because the father can do nothing but wait for the notice of the next project, “Sometimes when he stops working for a day or two, I become so nervous because he can only earn (income) when he has work that day.” Unstable income is another hidden concern of the family.

When going to school becomes a luxury…

Going to school is the daily life of every child, but for Chun-Ting, it all depends on timing. In order to take a rehabilitation bus to school, Chun-Ting and his mother must wake up at five in the morning and finish all the preparation, such as feeding milk, changing clothes, tidying up, and going to the toilet before leaving home, “It’s difficult for him and for everyone.” So, Chun-Ting can only go to school when they successfully reserve a seat on a rehabilitation bus.

 

Since Chun-Ting constantly needs someone to help move his limbs and suck out his sputum, he needs to be closely taken care of outside home or in school. If his sputum is not removed in time, he may suffer from breathing difficulty, “But the school won’t assign someone to sit beside and help you. They have limited manpower and may not be able to handle his needs. Or maybe he has to wait for a long time before someone can come.” His mother has to look after his younger siblings at home, so the domestic helper must accompany Chun-Ting to school and take care of him closely throughout the day.

 

Whole-family trip? Too wild a wish

Approximately $3,000 per month

Standing Adjustable Wheelchair	Estimated to be $50,000 – $60,000
Humidifier	Estimated to be $6,300
Sputum Suction Machine	Estimated to be $4,500
Manual Tilt Shower/Commode Chair	Estimated to be $3,400
Milk Powder + Milk Storage Bags	Approximately $3,000 per month
Filer Cotton	Approximately $300 per month