Admitted to the hospital when she was only 11 months old, her daily routine became an endless cycle of emergency resuscitation and intubation. When doctors wanted to give up on treatment, she proved them wrong with her thirst for life, willingly trying new drugs in order to be able to sit up.

This is the story of a resilient warrior suffering from Spinal Muscular Atrophy.
This is Josy Chow’s story.

“Every day I’m alive is a gift.” A big girl with big dreams, Josy actively fought for her fellow patients’ rights and interests, personally writing and delivering a 100-page appeal to the Chief Executive of Hong Kong. After 17 long years, Josy was finally discharged from the hospital and was admitted to the University of Hong Kong where she aspires to write about a world of social inclusion.

Standing on the edge of life and death, she continues to grasp onto life with the strength of her remaining two fingers.

“Hi, I’m Josy Chow. I’m currently studying English Studies at the University of Hong Kong.” Stepping into Josy’s home for the first time, I (the editor) saw a girl in a wheelchair. Wearing a hot pink t-shirt as bright as her dreams, throughout the interview I came to see a girl with stubborn determination and zest for life.

 

Little Josy was diagnosed with a rare disease when she was less than a year old. “When babies get tickled or teased, most babies like to grab onto a person’s finger, but she had no reaction at all.” During a visit to the doctors to get vaccinated, the doctor saw Josy’s mom supporting little Josy’s head with her palm. Her head would slowly slump whenever her mom let go. “The doctor said something was off.” After countless tests and muscle biopsies, Josy was diagnosed with spinal muscular atrophy.

On the brink of life and death, a harrowing 3 minute standstill

“I had just arrived at the hospital when the doctor said, ‘Your daughter received emergency CPR for 3 minutes. Luckily, her heart is beating now.’ Hearing that, my mind suddenly went blank.” Josy’s heart has stopped at least 3 times, once stopping for 3 minutes when she was 2 years old. When her condition was most severe, Josy’s mom was unable to work, there needed to be someone looking after Josy at all times. “I was in the hospital all day, watching the index rise on the monitor. If the alarm rang, I had to run and get the nurse immediately for first aid. I was like a robot guarding the life support monitor, I lost count of how many times a day I repeated this.” Over time, Josy’s mom eventually came to learn how to perform sputum suctioning and basic first aid, becoming Josy’s exclusive ‘robot’.

"I want to see Mommy, I want my lollipop!”

“I feel so helpless, waiting for death to come knocking. If I wanted to die, it would be so easy to just climb up and jump.” Witnessing her daughter receive emergency treatment and undergo general anaesthesia daily, Josy’s mom confessed, “Seeing my daughter in so much pain, maybe it would be easier to just end things.” Every time the rescue mission was successful, Josy’s mom would half-heartedly complain that the doctors were rushing to get off work. Mid-sentence, Mom’s eyes started to tear up, even easygoing Josy who was laughing from the sidelines fell silent.



A sudden hush, silently conveying a heart’s weary memories. “It’s painful, I rarely bring it up.” The doctor once asked Josy’s mom if she was willing to sign the DNR (Do Not Resuscitate) order. She told the doctor, “You should ask Josy, she’s already 3 years old.” The doctor asked, “Josy, what if you could go to a place where there’s no pain, where you’d never have to hurt again? Would you like that?” “No! I want to see mom, I want to have my lollipop!” Josy exclaimed. Like a movie sequence, the doctor astoundedly took two steps back. The answer affirmed little Josy’s will to live. The next day, the doctor even bought a lollipop toy to fulfill her wish.

Sleeping on hospital chairs, Mom has no regrets 

Sleeping on hospital chairs, Mom has no regrets
Ever since, Josy’s mother has devoted all her time and energy to taking care of her daughter. She runs around frantically to ensure Josy’s maximum comfort, sleeping on chairs at the hospital to stay by Josy’s side. Despite all the sacrifices, Josy’s mom has never once complained. “I can only do my best to help her as much as possible, she herself wants to live.” Whatever it is that her daughter wants to do, Mom unwaveringly offers her full support.

Since receiving treatment, Josy’s condition has largely stabilized. The range of motion in her palms has increased; she’s been able to reduce her usage of the ventilator. After 17 long years, Josy was finally discharged from the hospital! Mom had to take on multiple roles alone, leaving her job to take care of Josy around the clock. “I’m both the nurse, physiotherapist, and doctor. People think I have nothing to do, but in reality, there isn’t a single moment to rest.”

Without professional hospital equipment, sputum suctioning became a big concern. “Regular sputum suctioning units catch on fire after being on for half an hour. There was once our curtains caught on fire.” The family were forced to cave in and purchase a more advanced model. “This model can run continuously for 2 hours, allowing me to get a bit of sleep. When I wake up, I turn off the machine to let it cool before restarting it and going back to bed for 2 hours. With this method, at least I don’t have to stay up all night.” Sputum suctioning is an indispensable part of Josy’s life. Unable to swallow when lying down, Josy needs to have her sputum suctioned a few times per hour. If her condition worsens, she requires more frequent suctioning to prevent her from choking and suffocating.

Supermom designs her own "drink alarm"

To ensure she wakes up to reboot the sputum suction machine, Josy’ mom devised a special technique, “drink and pee”. She drinks a large glass of water before bed, forcing herself to wake up every 2 hours. She switches off the machine, uses the bathroom, restarts the machine, and drinks another glass of water before going back to bed. This happens 3-4 times every night. Despite the eye bags and constant bloating, Josy’s mom willingly does so without hesitation.

Have you ever blamed your mother? “No! Never! She’s already shed a lot of tears for me, emptying her savings to allow me to see the doctor. I’m grateful for my mom every day, that’s why I’m always happy.” Josy’s mom chimes in, “Seeing life flash before our eyes, I treasure every day she’s alive. To both of us, every day is a gift.” Josy’s mom doesn’t treat her daughter as a rare disease patient, doing her best to allow Josy to live out the teenage dream. Josy’s hobbies include playing video games, binging on dramas, and daydreaming about celebrities. “Although I’m studying literature, I’m pretty shallow. I usually fangirl over cute guys ...even talking about them is making my phlegm come up. With different tastes in shows, mother and daughter often fight over the TV, showcasing a different type of affection.

Mother and daughter, bickering with love

“Look at your face, it’s full of acne.” “Look at your big bum first!” Their tit for tat bickering is an indispensable part of their daily routine. With every affectionate clapback, the two showcase their incredible chemistry. With just one word, “Mom!” Josy's mom comes running to insert the sputum suction nozzle into Josy’s mouth. With another “Mom!” her mom automatically combs back Josy’s hair and fixes her clothes. “She’s my other half. If I get married later, he must first accept that I’ve been married once, because I’m already married to my mom.”

Despite discussing heavy topics like life and death, the mother-daughter duo remain ever in sync, facing the unknown with a dose of humor. “She said she wants her favourite boy band songs played at her memorial service. Josy confesses, “I’m not afraid of dying, but I’m scared of a long and painful death. If I leave, I want it to be happy and painless. I also think about how sad Mom will be, who is she going to argue with?” Mom retorts, “If you don’t want me to be sad then you shouldn’t leave.” Not missing a beat, the two return to admiring their prized collection of posters.

Fighting for treatment, “If you don’t save them, they don’t stand a chance”

The year spent waiting was agonizingly long. Josy’s friends passed away one after another, with 14 patients passing in total. “It was a tough year, there were memorial ceremonies held almost every month.” Describing it as a humanitarian intervention, Josy and her mom enthuse, “You have to save the worst ones first. The sooner the better, it’s a race against time. Our biggest wish is for every SMA patient to receive treatment as soon as possible. If you don’t save them, they don’t stand a chance!” The government finally accepted their proposal, launching an aid program a year later. Altogether, there were 8 patients including Josy who were granted the new drug in the first round.


Before the new medication, Josy was in the hospital every two months, even being admitted into the ICU. The main symptoms were pneumonia and a collapsed lung. There’s been significant improvement with the new medicine. “My breathing has improved, now I only need to use the ventilator when I sleep. My typing has gotten faster, and I can even feed myself sometimes. I used to need a lot of extra time for exams. One exam would take me 4 to 5 hours to finish, it was really taxing. It’s gotten a lot better though!”

"Mom sometimes teases me. She says if I get one less A on my exams, I’m not getting any dinner.” “I say yeah, it is a big deal. If I get one less A, we might not have food on the table. We won’t even have time to check out hot guys!” With the motto “Pass 3, break 4 (GPA)”, Josy is a certified optimistic jokester. Though cheerful by nature, Josy too has her moments of weakness. “I debated for over a year on spinal surgery.” Despite the promise of being able to sit up after the surgery, Josy was put off by the potential risks, “I might die!”.

Ridiculed for attending a “retard university”, Josy laughs it off

“I want to go back to school. I want to sit with my classmates during class!” This became Josy’s motivation for overcoming her fears and undergoing surgery. Good things come in pairs, through her hard work and dedication, Josy was admitted to the University of Hong Kong. “Someone said I’m going to ‘retard university’. It usually comes from the elderly, they don’t understand.” Treating it as a joke, Josy took the low blow like a champ.

“If you don’t want others to discriminate against you, you must first stop discriminating against yourself.” This open-mindedness has allowed Josy to make lots of friends at university, but university life hasn’t been all smooth sailing. With one set of medical equipment to split between two homes, Josy can only choose smaller and lighter pieces of equipment to move to her school dorm. After class, she has to lug the equipment back home. Josy pointed out that a lot of the equipment is dated and beyond repair, but she lacks the resources to replace them. “If both beds are broken, I can only afford to replace one of them.”

With a cheeky smile, Josy says she’s been forced to become a ‘deadline fighter’. “There are so many essays to write, it’s never-ending. Since we’re poor, I’m dependent on my scholarship to pay for the dorms, school expenses, and transportation so there’s pressure to keep my grades up.” Another difficulty has been trying to replace her laptop. The only model suitable for her needs has been discontinued. Josy worries that she’ll have to spend a lot more time on homework and exams if she’s unable to find a suitable laptop in the future.

Supplies needed  (estimated expenses)

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