The sun shines into the bedroom, coating the photos on the wall with golden light, highlighting the precious scenes from more than ten years ago. It is a time that cannot be returned but is remembered fondly. The little girl in the photo is either standing in the playground or standing by the sea. "When she was two years old, she knew how to walk, she knew everything." Her mother said, looking at the slightly yellowed old photo. Kiki (14 years old) in the wheelchair next to her pointed at one of the photos of her sitting on a hospital bed wearing a hat and smiled and said to her mother, "I shaved off some of my hair at that time." "You lost a lot of hair during chemotherapy." The mother and daughter recounted the unbearable past indifferently.

The figure of Kiki running and jumping was frozen at the age of two. That year, Kiki suddenly continued to have a low fever for nearly a month. "It's not good to constantly see a doctor. One day when I got home, I found that she was lying in bed and couldn't get up. No matter how I called her, she couldn’t get up. Her stomach was very bloated, so I went to the hospital with her right way.”

At that time, Kiki was already incontinent. The doctor examined her whole body and had an MRI. They found that her entire spine was a tumor and diagnosed her with a rare cancer - spinal glial tumor. The next day, she was immediately operated on for more than 10 hours to remove the tumor. "The doctor said he had treated so many people, and it was the first time he noticed a condition like Kiki’s; it stems from a genetic mutation in the body, not genetics."

Kiki was in a coma for nearly a month after surgery. Doctors found her lower body unresponsive and suspected to have died from nerve damage. From then on, she was unconscious from the chest down, with only limited mobility in her left hand, and she had to continue undergoing chemotherapy. Losing all her hair until she was discharged at the age of five.

The aftermath of the surgery is the constant inability to take care of oneself

The unconscious lower body is not only not able to feel cold and hot pain touch, but also cannot defecate normally, urinary and fecal incontinence, needing the mother to help press, everyday using a wheelchair to go in and out. Pressure sores caused by long-term sitting and lying pressure on the muscles can cause muscle necrosis, which can deteriorate into fatal sepsis ... Countless after-effects keep Kiki in and out of hospitals and operating rooms.

The husband, who works as a cook, was busy working and betting on horses, while the mother held her second son and ran around with her daughter seeking medical treatment. "I can't believe why my daughter is like this, it is very unhappy, she would cry. I had just arrived in Hong Kong at that time, and I didn't speak Cantonese. The doctor told me a lot of things that I couldn't quite understand.” There was a language barrier, no way to ask for help, countless times waiting alone in the cold hospital corridors. "Every time I wait outside the operating room, crying. I don't know if she can get out this time, that moment is very helpless."

Plus, huge medical rehabilitation expenditures: medical supplies, follow-up visits, transportation, hospitalization, wheelchairs, diapers... But Kiki’s father spent his salary gambling, which made her mother stressed on the verge of bursting, she was emotionally unstable, and suicide thoughts kept popping up. “But then I thought, if I left Kiki, no one knows how to take care of her except me, so I can't bear it", "Seeing Kiki so optimistic and very nervous about their follow-up visits, seeing her daughter so persistent in wanting to survive would feel worth it no matter how hard it was,” Kiki’s mother said with tears in her eyes.

 
"My family has a daughter who has grown all up ", to others is the joy of a teenager blooming, but puberty brings physical changes that worsen the aftermath, Kiki has to return to the hospital for follow-up visits two or three times a week, "Before puberty, the condition was not as serious. I hear that I must see many doctors, do many surgeries, and sometimes I’m unhappy after a follow-up visit and hide in my room crying.”.

Spinal surgery faces a life-and-death game

"She may be in much worse shape now because she has grown taller. Her waist is crooked, and her scoliosis is very serious." Her mother said the doctors suggested that Kiki have surgery as soon as possible. "Put a steel pipe down the spine. But the surgery is very risky. It's possible that she won't be able to leave the operating room. I didn’t let Kiki do it...” Mom choked. “Mom doesn’t want to be without you.”

Kiki, who is unconscious in her lower body, often delays treatment because she cannot feel her physical injuries. Last year, she was admitted to the hospital twice to remove the necrotic and blackened muscle due to the worsening of pressure sores on her hip. She stayed in the ICU for more than a month. But the wound was often contaminated with excrement, easily infected, and has not healed so far. It has expanded to the size of a teacup, the doctors were helpless, it was like a time bomb. Her mother said that Kiki was prone to sickness since childhood. "When she had a fever, I was very worried. Is it really as simple as a cold? But when I asked her to go to the hospital, she refused, saying the doctor wouldn't let her back out, it is a struggle every time.”

Another person who didn't want Kiki to be hospitalized was her younger brother. "When he sees his sister packing up to go to the hospital, he will cry and refuse to let her go, for fear that she will not come back," her mother said. The younger brother beside her scratched his head shyly.

Dreams of exploring the world

Kiki envied her brother for being able to go around, “I wanted to visit the (Victoria) prison he talked about, but it seemed like quite a lot of stairs,” and “He always told me how many things I hadn’t seen,” she said. “Want to go with your brother?” Kiki nodded vigorously, “But wherever my brother goes, I can’t go because it’s mostly up the stairs.” Are you disappointed? “A little bit, though you get used to it, it is like that every time, ever since childhood.”

She loves to see graves and listen to ghost stories, and her dream was to be an explorer. “I want to explore the world, I love history, I want to see the historical sites, I want to know what happened.” Most of all, I want to go to Egypt to see the pyramids and the tombs of the pharaohs. I visited the urban legendary Bridal Pool before but could only see it from a distance from a high place.

"I couldn't go to many places in Hong Kong, let alone other countries, so I thought it was impossible and gave up on my dream of being an explorer. "In the future? No, I will just simply do a clerical job, finding a job is enough.”

Kiki experiences a similar feeling of powerlessness almost every day: "I tried to cook at school and wanted to try it when I got home, but the wheelchair but the kitchen is not wheelchair accessible.”

"I really want to play the piano and play an instrument, but because I have to use both hands, using my left hand is not very convenient, so I can't play the piano." But I turned to the harmonica and harmonica’s can be played with one hand.

I'm looking for my own way

“I was so envious as a kid that people could walk and be able to go to the park and play. I can't do anything by myself. But when I grow up, I know that even if I can’t go to the park to play, I can do other things I can do.” Kiki, who loves dramas, comics and music, has shown her talents, singing with singers at a Yan chai charity event and won runner-up in a children's story telling competition.

Turning the tablet on her desk casually, she was following the comic book " Oshi No Ko" about her acting idol. Kiki calls herself "Edan Shi" (fan name), she likes Edan Lui (Edan), also loves MC (Michael Cheung Tin Fu), and Yiu Sum Yuet (spinal muscular dystrophy patient https://rb.gy/kdu9cn) and other classmates, went to see MC’s Street performance together.

The Lifewire team offered to make a short video for her to cheer up Edan and MC. She immediately thought about the content seriously and couldn't hide her bright smile: "Edan, I really liked your performance in ‘be on game’ (television show). It was funny and you were showcasing your natural self on camera”, "MC, although I can't go to your concert, I will silently support you."

Mother and father are living in poverty

In recent years, after Kiki’s school social worker learned about her family's financial situation, she referred her to apply for a subsidy and hired workers to help take care of Kiki. Her mother could take time to work outside to help support the family, which is also a breath of relief. But for bathing, cleaning and other hygiene-related care, her mother will never rely on others to prevent infection.; In addition, she has to take care of her two young sons, and sometimes take Kiki to the hospital at night, where she only has almost three or four hours of sleep a day.

Life is an adventure

Facing challenges in real life and putting her health in danger time and time again, Kiki and her mother find ways to overcome the difficulties. Perhaps the biggest adventure scene is not in Egypt nor the pyramids – but life, life is an adventure.

Reported and written by: Carina、陳偉麒

Editors：陳偉麒、梁劍紅

Photography：Sea.Pho.Yea、Ken Mok

Video Production：Lifewire、Ken Mok、Sea.Pho.Yea