Girl with Moyamoya Disease - Kwong Hoi Kei

When the "Lifewire" team arrived at 21-year-old Kwong Hoi Kei ’s home, her mother was busy in the kitchen brewing Chinese herbal medicine while simultaneously putting away homemade stretching tools hanging from the ceiling. Beside her, Hoi Kei was picking at a hamburger for lunch; before long, she said she was full, unable to even finish the crispy fries.

The illness has stripped Hoi Kei of her appetite—she can barely finish a single bowl of rice a day. Coupled with poor absorption, she has become emaciated, appearing as little more than "skin and bones." "A few years ago, her weight managed to reach 36 kg, but it has been slowly dropping again over the last two years," her mother said anxiously. She tries every possible way to stimulate her daughter’s appetite: "She likes fried chicken and savory, flavorful foods. I can't replicate that at home, but I try my best to accommodate her by slow-cooking and braising dishes until they are very tender, which she prefers." Her only hope is for her daughter to gain weight and build muscle mass.

Café-au-lait spots appearing all over the body

Shortly after Hoi Kei was born, numerous café-au-lait spots began to appear on her body. After multiple referrals and examinations, she was diagnosed with the rare disease Neurofibromatosis Type 1 (NF1). At the time, doctors noted that many patients experience only mild symptoms, such as skin pigmentation or small benign neurofibromas that do not interfere with daily life. Consequently, her family did not think much of it at the time.

However, these Café-au-lait spots made her a target for school bullying; during her primary school years, she was ostracized by classmates and mocked with unkind nicknames. In 2017, at the age of 12, Kai-ki was admitted to her preferred Band 1 secondary school. This move allowed her to escape the bullying and make a circle of close friends, a period she describes as the happiest time of her life.

Cerebral Hemorrhage and Stroke Caused by Moyamoya Disease

However, this period of happiness was short-lived. About six months into the school year, while having afternoon tea with classmates after school, she suddenly began vomiting uncontrollably. Her panicked friends rushed her back to school for help, shortly after which she fell into a coma.

Emergency hospitalization revealed that she was suffering from a rare cerebrovascular condition known as Moyamoya disease. In this condition, the narrowing and blockage of major arteries in the brain result in insufficient blood supply, triggering the growth of a network of tiny, fragile vessels to compensate. These vessels appear like a "puff of smoke" on an angiogram, giving the disease its name. Unfortunately, these delicate vessels are unable to withstand adult blood pressure; they eventually ruptured, causing Hoi Kei to suffer a hemorrhagic stroke.

It was the doctors who gave her back her life

"I gave her life for the first 12 years; after that, it was the doctors who gave her life back to her," her mother said. During her six-month hospitalization, Hoi Kei underwent multiple brain surgeries, including the installation of an intracranial shunt to drain excess fluid (hydrocephalus). She also battled infective endocarditis and was diagnosed with a septal defect (hole in the heart). Time and again, doctors managed to pull her back from the brink of death.

Throughout those months, Hoi Kei had been delirious, struggling to pull out her life-support tubes and failing to recognize her own family. The very first words she spoke upon regaining consciousness were, "Mommy, I’m sorry."

Choking back tears, Mrs. Kwong recalled, "That was the first time in over five months she had spoken to me with a clear mind. I had prepared myself for the possibility that she might never remember us again, so at that moment, I felt an immense sense of relief." As she wiped away her tears, Hoi Kei , who had been joking around moments ago, fell silent and gently handed her mother a tissue.

Multiple Brain Surgeries: Memory Loss and Impaired Vision

Hoi Kei recalls, "I have no memory of the incident whatsoever. I had no idea what happened; it felt like waking up from a long sleep only to realize, 'Oh, so I have this condition.'" Her mother added, "When she was first discharged, she could only remember things that had just happened; an hour or two later, the memory would be completely gone."

The stroke severely impaired Hoi Kei’s memory and damaged her vision, narrowing her field of view to just one-third of its normal range and causing strabismus (crossed eyes). She had to relearn how to walk and eat, all while living under the constant threat of another brain hemorrhage.

Friends Become Strangers: Physical Decline and Wheelchair Dependency

Returning to school after a six-month hiatus, Hoi Kei found her once-close friends had grown distant. "I’m not sure if they were afraid of hurting me, or if we just grew apart while I was in the hospital, but we could never go back to the way we used to play together," she remarked.

"Her poor memory added to it," her mother noted. "People found it strange—they’d just told her something, but a moment later, she’d act as if the conversation never happened."

After repeating Secondary 1, Hoi Kei realized her physical strength and memory couldn't keep up with the curriculum, so she transferred to a school for the physically disabled. She described the new school as incredibly supportive, and she even made new friends, but a greater challenge was lurking ahead.

With her parents accompanying her daily for practice, Hoi Kei had once recovered the ability to walk normally. However, about two years later, her gait began to deteriorate again. She walked with an unsteady, swaying motion, constantly stumbling. "I would bump into everything. Walking from the front door to the balcony, I’d hit the fridge, then the table—just bumping into everything," she recalled. Covered in bruises and falling frequently, she initially used a cane, but her condition eventually regressed to the point where she became wheelchair-dependent.

Regrowth of Neurofibromas: Impacting Vital Organs

Doctors discovered that the neurofibromas have caused skeletal lesions in Hoi Kei’s body; her spinal and cervical regions have narrowed, compressing the nerves. This, combined with the fibromas located on her spine, has severely compromised her ability to walk. "Right now, the tumors are most concentrated in her brain and spine—they grow in clusters, like strings of beads," her mother explained.

The proliferating fibromas are impacting various organs, including her lung function. Together with the effects of her septal defect (hole in the heart), she suffers from chronic oxygen deficiency and shortness of breath. Even while sitting and speaking, she struggles to breathe. Furthermore, her nerves are either racked with pain due to compression or have been severely damaged, causing surrounding areas to lose function and leading to a continuous decline in her physical condition.

Her hands are no longer capable of operating an electric wheelchair. Seeing that Hoi Kei would grow exhausted and short of breath after walking for just two or three minutes—with her heart rate soaring to 160 beats per minute—her family purchased an electric wheelchair two years ago, hoping she could regain some independence and expand her social circle. However, they soon discovered she lacked the coordination to operate it. Over the past year, the weakness in her hands has intensified; she can no longer even tie her shoelaces. "I used to help set the table for dinner," Hoi Kei recalled, "but now, I’ll drop a chopstick halfway through, and I can't hold a cup or a bowl steadily." Even washing her hair now requires her mother's assistance. "She’ll be drinking from a water bottle, and it will just slip and fall to the floor; she’ll be brushing her teeth, and the toothbrush drops," her mother added. Hoi Kei is unable to fully extend or straighten her fingers. Moreover, because of the profound weakness in her legs, she "collapses" into her seat whenever she tries to sit down. Her mother fears that if her condition continues to deteriorate, she will become completely unable to care for herself.

High-Risk Spinal Surgery: A Choice Under the Threat of Paralysis

Doctors are planning surgery to straighten Hoi Kei’s cervical spine, but the risks are astronomical. Her mother said anxiously, "The doctor said she is so frail that the surgery is massive—she could lose all her blood before the procedure is even finished." Furthermore, it is uncertain whether the surgery will improve her mobility. "But if she doesn't do it, she faces total paralysis and failing heart and lung functions."

Neurosurgeons also plan to perform a cerebral revascularization (bypass) surgery to improve blood flow and reduce the risk of further hemorrhaging. Facing multiple major operations, Hoi Kei, who has no memory of her previous stroke surgery, remarked with a smile, "Since I lost my memories of 2017, I don't know how terrifying surgery can be, so I’m relatively less worried."

Constant Nausea and Crushing Headaches

However, a lingering sequel from the stroke—constant headaches—haunts her daily. "I get headaches and feel nauseous very easily, which ruins my appetite. The pain feels like something is crushing my head." Throughout the hours spent with the "Lifewire" team, her head throbbed persistently. "I've grown used to this kind of pain. Sometimes it's so severe that there's nothing I can do but stop eating." At least once or twice a week, she suffers from intense episodes lasting several hours, often vomiting after eating and requiring painkillers and rest.

Losing Life’s Greatest Treasure: Friendship

When asked what the disease has stolen from her that she treasures most, Hoi Kei answered without hesitation: "Friends." To this day, her Facebook profile picture remains a group photo with her Secondary 1 classmates, a testament to how much she misses those days. She has also lost her freedom of movement and her academic pride. "I used to be a good student, ranked in the upper-middle tier. Now my grades are poor, which has been a huge blow to me."

Aspiring to be a social worker, she is currently enrolled in a related course at IVE. "But I might have to transfer majors because I can't keep up with the curriculum." She tires much more easily than her peers, requiring more rest while balancing a relentless schedule of follow-up appointments in orthopedics, neurosurgery, cardiology, oncology, and ophthalmology. Unable to meet assignment deadlines and fearing the physical demands of future internships, she is considering switching to a Digital Business program, hoping to pursue her original dream once her health improves.

Picking at Scabs: Using Physical Pain as a Vent

When faced with frustration and sadness, Hoi Kei tends to bury her emotions deep inside. "I like to pick at the scabs on my wounds as a way to vent. There’s a sense of release in that moment—being able to actually feel the pain. But I don't recommend this method; please don't follow my example." As she spoke with a smile, the wounds on her elbows and calves were once again raw and bleeding from being repeatedly picked at.

Prohibitive Medical Costs: Over $70,000 a Month

Recently, a drug designed to inhibit the growth of neurofibromas passed drug review in Hong Kong. However, because Hoi Kei is over 18, she is ineligible for government subsidies and must pay out of pocket. The medication costs $1,000 per pill; at her current dosage of two pills a day, this alone costs over $60,000 a month.

In addition to the high cost of medication, Hoi Kei requires nutritional supplements, physical therapy, occupational therapy, and hydrotherapy, as well as Chinese medicine treatments like acupuncture and Tui Na (massage therapy). Although these treatments have shown significant benefits in improving her memory and physical functions—effectively slowing her deterioration—and the family wishes to increase her sessions, the current total cost already exceeds $10,000 per month, making it an unbearable financial burden. Furthermore, asHoi Kei’s limited mobility requires her parents and older sister to take turns staying home to care for her, the family income has plummeted, leaving them in a state of financial deficit.

Rehabilitation Tools: Handcrafted by Her Father

To enable Hoi Kei to continue her rehabilitation exercises at home, her father custom-built various tools, such as hanging ropes from the ceiling for her to pull and strengthen her arms. Her older sister also plays Switch games with her as a form of light exercise. Furthermore, the entire family frequently accompanies her to activities organized by "Lifewire," hoping to broaden Hoi Kei's social circle and bring more joy into her life.

"The span of life lies within your hands."

Hoi Kei still occasionally bickers back and forth with her mother. Witnessing her own gradual decline from a healthy young girl, the two of them said in unison, "Our mindset is that since we lack the power to change the situation, our only choice is to accept and face it." Her mother shared her aspirations: "I hope she can regain her self-care abilities; I hope she can be healthier and happier, and that her condition won't get any worse. No matter what, we must look forward. The length of your life is in your hands—you must keep fighting for yourself."

採訪、撰文：劉嘉欣、陳偉麒、梁劍紅
編審：梁劍紅、陳偉麒
攝影：Sea.Pho.Yea、鄧欣
影片製作：Lifewire、鄧欣、Sea.Pho.Yea
採訪日期：2025

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May 2026 Update

Kwong Hoi Kei triumphs after a high-risk surgery of over 15 hours!

Hoi Kei, who relies on a wheelchair due to Neurofibromatosis Type 1, congenital heart disease, and Moyamoya disease... Faced a deteriorating condition as bone lesions and neurofibromas growing along her nerves narrowed her cervical spine.

In mid-April, Hoi Kei underwent two ultra-high-risk, life-threatening surgeries: The Neurosurgery team removed tumors at the C1 and C2 levels of the cervical spine. The Orthopedic team performed spinal correction from the C3 cervical spine to the T8 thoracic spine.

The surgery lasted from 8:00 AM until 11:00 PM that night. With 9 units of blood transfused during the process, the surgery was successfully completed.

After the operation, Hoi Kei, who has a history of brain hemorrhage and stroke, remained in the ICU and was fed via a nasogastric tube. She mentioned that her right hand is now more flexible than before, but her left hand is weaker and cannot be lifted. Her head and body feel stiff like a board and cannot move for now; she needs some time to rest and recover.

Thanks to everyone’s donations and care, we hope for Hoi Kei’s speedy recovery. With every bit of extra protection for their lives, these children gain the chance to pursue their dreams.