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Cindy Sui

Imagine waking up one day and suddenly being unable to use your legs. That was what happened to Rain Shiu Tin-yung in Hong Kong when he was six.
“He got up that morning, but his knees hurt so much that he couldn’t walk. He was in so much pain,” Shiu’s mother, Apple Kwok Siu-ping, recalled.
The pain only worsened.
“All his joints were inflamed. It was so painful he would wake up crying,” Kwok said. “He went from being able to walk to not walking at all.”
It took several visits to the doctors and tests before Shiu, now 20, was diagnosed with paediatric rheumatism, a broad term for more than 100 autoimmune disorders in children, where the body’s immune system mistakenly attacks healthy tissues, causing inflammation and chronic pain in joints, muscles and other areas. At the time, awareness about this rare group of diseases among doctors was still low.
In 2005, rheumatology specialist Dr Lee Tze-leung led a group of patients, family members and other professionals to establish the Hong Kong Paediatric Rheumatism Association (HKPRA), a non-profit dedicated to raising awareness and providing mutual support for children with rheumatic diseases and their carers.
Today, the association serves over 800 members, of whom about 400 are children.
HKPRA is one of 13 charities to receive funding from Operation Santa Claus (OSC) this year.
The two-year funding will help sustain its decade-long programme offering much-needed medical subsidies to around 100 children living with rheumatic diseases.
The support aims to alleviate the financial burden on families who must pay for new, effective drugs not covered or only partially subsidised by the Hospital Authority, which are crucial for preventing the deterioration of these children’s conditions so they can live relatively normal lives.
“They need help. For some patients, treatment can cost as much as HK$8,000 (US$1,027) a month for just two injections,” said Raymond Chung Yik-cheung, HKPRA’s chairman.
The biologic injections, which suppress the immune system and prevent it from attacking the body, cost HK$2,000 to HK$4,000 each and are typically administered once every two weeks, according to Chung.
The association also offers mental well-being workshops to about 400 child patients to help them manage pain and build confidence despite the challenges of their illness.
Without the subsidy, it would have been “very hard” to pay for her son’s medication, said Kwok, whose husband works as a construction site foreman.
“That’s a third of our income. We wouldn’t be able to eat,” she said.
Shiu, who can now walk again thanks to the medication and recently sat for his college entrance examinations, said that beyond financial assistance, HKPRA helped him the most by connecting him with a supportive community.
“I realised I’m not the only one. Before I would ask ‘Why me?’,” he said.

In Hong Kong, doctors estimate that between five and 18 out of every 100,000 children develop juvenile idiopathic arthritis, the most common form of childhood rheumatic disease.
More needed to be done to raise public awareness so that patients could be diagnosed early, which was crucial for preventing joint deterioration, said Florence Chow Lai-sim, an executive committee member of the HKPRA and wife of its chairman.
With early diagnosis and proper treatment, many young patients – including Chung and Chow’s daughter – are able to grow and lead normal lives, working as entrepreneurs, lawyers, accountants and IT professionals or studying to be doctors and nurses.
“That is why our funding is very, very important,” Chow said. “We hope all our children can continue to receive the medicine they need, grow in confidence, have a normal education like their friends and go on to have good careers.”
During last month’s deadly Tai Po fire, one of the families supported by HKPRA lost their home. Thankfully, they survived.

The family’s daughter, who has rheumatism, was in school when the fire broke out. Her brother, a university student, alerted neighbours and together they used wet towels and safely made it down 23 flights of smoke-filled stairs, Chow said.
The biologic injections stored in the fridge were destroyed in the fire, but the girl’s doctor quickly arranged a new supply so her treatment could continue without interruption.
OSC, jointly established by the Post and public broadcaster RTHK in 1988, has raised about HK$396 million for over 365 charity projects and helped more than 100,000 people.
In addition to its annual fundraising drive, it is leading an emergency appeal to meet the specific needs of residents affected by the inferno.
All proceeds will support this year’s 13 OSC‑funded charity projects and community partners involved in the fire relief efforts in Tai Po.
Click here to learn more about how to donate to OSC.


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Operation Santa Claus helps Hong Kong children with rare rheumatic diseases

(From left) Apple Kwok, Rain Shiu, Florence Chow and Raymond Chung make heart signs to show the love patients get from the charity. Photo: Cindy Sui

Children with paediatric rheumatism receive medical subsidies and support from the association. Photo: Handout

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OSC Xmas Tree. Photo: SCMP

Participants in this year’s event. Photo: Juan Otero 

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Hong Kong Paediatric Rheumatism Association subsidises medicine and provides support for children with rheumatic diseases and their carers


Hong Kong Paediatric Rheumatism Association subsidises medicine and provides support for children with rheumatic diseases and their carers.


Operation Santa Claus

Operation Santa Claus helps Hong Kong children with rare rheumatic diseases

.css-1c6uqr6{color:inherit;font-weight:inherit;font-size:inherit;font-family:inherit;line-height:inherit;overflow-wrap:break-word;}Hong Kong Paediatric Rheumatism Association subsidises medicine and provides support for children with rheumatic diseases and their carers

Hong Kong Paediatric Rheumatism Association subsidises medicine and provides support for children with rheumatic diseases and their carers