Only Two Precedent Cases Globally
Siblings Fighting Rare Disease with Laughter

This is a story of a family of five. Two children suffer from serious illnesses, but the family could only afford treatment for one. Overwhelmed by the devastating trials and tribulations, the mother of these children was later diagnosed with depression. This downturn of events is even more tragic than those in Korean dramas. But how did this family of five choose to face their hardship? With their courageous smiles.
 

The Mystery Cases of the Chan Siblings

“Yau Chun didn’t know how to walk when he was 1, and I began to wonder if he was having the same condition as Ka Wa. So I brought them to the hospital for genetic testing,” Mrs Chan recalled. Doctors at the Queen Mary Hospital diagnosed that Yau Chun’s condition was similar to that of Ka Wa, only that was much more severe. These were very rare cases. At that time, the doctors were unable to determine whether their conditions were caused by gene mutation, or even what kind of disease they were suffering.

“I couldn’t even fathom the news. It was just too hard to accept,” Mrs Chan said.
 
When Ka Wa and Yau Chun were born, the doctors confirmed that they were in good health. No one would have foreseen that a rare disease would become their companion from such a young age. Mr and Mrs Chan made every effort possible to seek medical treatment for their children. They tried heading to Guangzhou and Zhongshan, and even ask relatives for financial support. With a strained smile and tears streaming down her face, Mrs Chan recalled those bitter memories, “There was no one back home who wanted to offer help. They only questioned why I gave birth to two sick kids”.

Severe Hip Dislocation. Fear: Unsuccessful Surgery May Cause Paralysis

The Chan siblings are as jovial as little piglets in fresh mud. Their eyes would turn into smiling crescents as constant cackles filled the air. It is disheartening and tragic that these pair suffer from the same incurable disease at the same time.

The first time Yau Chun was sent to the Intensive Care Unit, he did not wake up for two days.

Every night, Mr and Mrs Chan would each accompany one of the Chan siblings to bed. They would hold their hands for the whole night and check up on them at every twist and turn. When the Chan siblings were later arranged to reside in nursing dormitories, Mrs Chan would frequently remind the nurses to pay extra attention during their night patrols. Mrs Chan explained, “They get cramps at night when they sleep, and they wouldn’t be conscious.”

Often drooling, Yau Chun could only pronounce simple sounds like “um” and “ah”. He needs to rely on a specifically designed wooden chair to sit properly. Yau Chun’s condition is complicated. He suffers from convulsions, epilepsy, intellectual disability and developmental delays. Last year, his hip bone started to dislocate due to tensions in the nerves. His left hip is displaced by 20% and his right hip is dislocated by a staggering 60%. This affected his hip joints. His doctor has suggested cutting the nerve endings behind the spine, but there are possible risks of infections.

“If the condition is not dealt with, the condition will worsen. But we are very worried that the surgery is high risk.” Faced with the dilemma, Mr and Mrs Chan’s days are filled with constant fear and anxiety. “We are frightened that he will become totally paralysed. If that happened, he won’t even be able to control his bowel movement in the future, and there won’t be any chance of him ever standing up again.” Finally, the doctor advised doing a comprehensive consultation again before making the decision.

Deteriorating Legs Requiring Dozens of Injections

Though Ka Wa’s condition is not as serious as Yau Chun’s, she often had cramps in the middle of the night during her kindergarten age. Hospital visits became the norm. After Ka Wa moved into the nursing dormitories, Mrs Chan’s anxiety did not lessen much. “Every time the school or the nursing centre called, my heart would skip a beat. I’d think to myself that there must have been an accident!”

Ka Wa gets cramps twice a day. Every month, she would need to be admitted to Queen Mary Hospital two to three times. “Her face would turn purple, and she wouldn’t be able to breathe, so we must call the ambulance.”

Despite being attached to a wheelchair and needing some assistance in taking showers and going to the toilet, Ka Wa can handle most basic daily tasks. She has been trained by Mrs Chan to help with “significant tasks”. With Ka Wa’s bigger sister accompanying her, Ka Wa can now wheel herself to the market and buy groceries. However, the condition of Ka Wa’s legs is worsening by the day. She could barely walk with someone holding her. As she spends most of the day sitting, her waist and back muscles are also getting weaker by the day.

“I get so hot when I walk. I’ll get super sweaty just trying,” said Ka Wa, who was perspiring profusely. To improve the condition of her legs, she has to endure long-term medical injections. Mrs Chan felt sorry for her daughter, saying, “She needs to undergo dozens of injections on her pair of legs.” Alternatively, Ka Wa can choose to go through surgery to relax the tendons and insert a pump inside the body. The drugs can be directly injected into the pump every two or three months and the pump can release the drugs regularly to the rest of the body. This can reduce the pain, but the risks are unknown. Even the doctor does not recommend it. So, they decided to wait till she is older before trying this method because it seems like no children have ever tried it before.

“Ka Wa was scheduled to try on new treatments, but because Yau Chun was admitted to the hospital during that time, we didn’t end up taking Ka Wa to the trials.”

Parents Felt Helpless. They Could Only Afford to Treat One Kid Out of the Two

 A Mother’s Anxieties Turned Illness: Panic Attacks and Emotional Disorders

The incurable problem and chronic stress have resulted in Mrs Chan being diagnosed with depression, requiring psychiatric and psychological therapy.

“The doctor told me that I suffer from panic disorder and emotional illnesses. I couldn’t believe it. These few years have been very tough. In and out of the hospital all the time. I feel like I can’t breathe sometimes, and I would often feel faint. It feels like I’m short of breath easily...those are scary hyperventilating episodes,” Mrs Chan told us.

Ka Wa who was giggling on the side was shocked to see her mother tear up. With a tight smile, Ka Wa wisely put her hand on her mother’s back, soothing that deep, invisible scar. Mrs Chan immediately smiled and said, “Good girl. Good girl.” A little sweetness in the mix of bitterness.

Elder Daughter Yi Lin Becomes Parents’ Right Hand

It is impossible for Mrs Chan to carry all the responsibilities that come with daily visits to the hospital. 15-year-old elder daughter Yi Lin plays a pivotal role in the household.

Mrs Chan explained, “If dad is at work and we want to go out, we will need Yi Lin’s help. If she’s at school, we won’t be able to head out and we must stay at home.”

Taking care of her younger siblings, her studies and her mother’s health, Yi Lin admitted that she was under a lot of pressure. “Every time I see my mother working so hard, I will tell her to rest up, rest up and rest up.” Yi Lin tried to hold in her tears but tears still flowed involuntarily. Even at a young age, Yi Lin was already shouldering a lot of weight. “I’m mum and dad’s assistant. If mum is here, I will help out to do dad’s duties. If dad is here, I will help out to do mum’s duties.”

Whenever younger siblings come home from the nursing dormitory on weekends, Yi Lin tries to accompany them as much as possible and patiently teaches them word by word. “I know that Yau Chun loves listening to music. With some music, he would turn super happy. Then I would play with him, directing him to use his hand or play games by holding his hand.” On weekends, the Chan family spends them with laughter and play.

Compared with girls of the same age, this elder sister is very mature and dependable. She’s her brother’s interpreter and telepath. She can fully grasp what Yau Chun is thinking based on the smallest of movements. “Oh, he wants to watch this game!” During our visit to the Chan’s, when Yi Lin felt sad and cried, Ka Wa and Yau Chun followed suit and wept together. Three siblings crying and laughing together was the epiphany of family and connectedness.

Despite the tribulations, this family is signified by mirth. Laughter, positivity and warmth filled the air on the day of our visit. If someone mentioned the darker days and experiences, another family member would turn tears into laughter using simple words and action. It is truly a vibrant and authentic home. Mr and Mrs Chan only wish that their kids can grow up being happy individuals, and do all that they can in their power to provide for them.
 

How to support Ka Wa and Yau Chun? Donate now!How to support Ka Wa and Yau Chun? Donate now!

This cause's reference number is「3614」

Donations of HKD$100 and above are eligible for tax deduction.
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Convulsions worsening for Brother Yau Chun

Yau Chun was admitted to the hospital in November last year. Because the number of convulsions became very frequent, and each convulsion lasted for more than 10 minutes. Every time medication was administered, it would take about 5 minutes before the convulsions would stop. The doctor considered that his situation was critical. In December, after doctor’s consultation, it was believed that a “trial injection” can be arranged, so that the necessary medication can be delivered from within the body regularly.

Separately, because Yau Chun couldn’t control his wheelchair with his hands, he could only use his chin to control an electric chin control wheelchair. But this required over $100,000, and the parents could not possibly afford it. After a few months of fundraising, your generosity has helped the Chans overcome this difficulty. However, this wheelchair is out of stock at the moment. Social workers are out searching an available one for Yau Chun. We hope that Yau Chun can get a new wheelchair soon and rediscover that dignity that he deserves!

Sister Ka Wa Undergoing “Trial Injection” for Surgery

 Ka Wa, whose condition was not as serious as Yau Chun, was arranged to go through an injection trial recently, to prepare for surgery to loosen the tendons. Ka Wa requires regular injections to relieve the stiffness in her legs. Some two years ago, the doctor suggested to undergo a surgery to loosen the tendons. But because no children in Hong Kong had ever undergone this surgery before, the Chans were worried about the risks and so they left it aside. This year, the doctor considered that Ka Wa’s condition was suitable, therefore rearranging an injection trial. If the feedback of the trials are positive, Ka Wa can proceed with the surgery to loosen the tendons and insert a pump inside the body. The drugs can be directly injected into the pump every two or three months and the pump can release the drugs regularly to the rest of the body. Though Mrs Chan is worried about the risk of the surgery, she would also wish for her daughter to suffer less.


Please join us in making monthly donations to support this pair of siblings in their long-term medical care.

 
Updated in March 2021