Latest Activities

Lifewire previously invited everyone to send their well wishes for children with rare diseases to us so we could pass them on to their families, inviting you all to become "pen pals." A supporter has already handwritten a letter to one of the children: "The path is indeed not an easy one to walk; always remember that there are many people supporting you along the way." This has brought strength to the children. We have already delivered the letters to YY Tse Cheuk-yau and Yiu Sum-yuet, both of whom have Spinal Muscular Atrophy. They have truly felt this care reaching them from afar.

Diagnosed with a spinal cord glioma at the age of two, Yeung Kaying was left paralyzed and without sensation from the chest down following surgery, with only limited mobility in her left hand. Fond of music since childhood, she overcame her physical disabilities to learn the harmonica, melodica, and glockenspiel. Kaying says music helps her relax and heal, and that even just watching others play the piano is therapeutic. Although she once thought the piano was beyond her reach due to her weak left hand, she has defied fate through sheer determination and is now preparing for her Grade 3 piano exam.

A group of children with rare diseases make the orchestra more than just something to listen to, but something to behold. Thank you to the Hong Kong Philharmonic Orchestra for collaborating with Lifewire for the third time to hold a charity concert at the Academy for Performing Arts on June 27th. This is not just a musical experience; sand artist Mr. Ma Koon-ping will also lead a group of Lifewire children to express their hearts through art.

Xioa Hiu-chun, who suffers from the rare disease Morquio syndrome type IV, has a body that lacks the enzyme needed to break down a specific mucopolysaccharide called keratan sulfate, causing mucopolysaccharides to gradually accumulate in his body and damage his bones and cartilage. Although Hiu-chun is 16 years old, he is only 98 centimeters tall, resembling a 4-year-old child. Furthermore, he suffers from severe deformities of his hands, joints, and sternum, poor sleep quality, and malabsorption of nutrients. His gait is slow, and he requires his elderly great-aunt to provide around-the-clock care.

Lifewire and a group of rare disease families escaped the hustle and bustle of the city and headed to the Charity Farm in Yuen Long.

Hester Chan, who lives with an undiagnosed rare disease, and Rong, mother of Chan Ka-wah and Yau-chun who suffer from Hereditary Spastic Paraplegia (HSP), served as instructors for a lion dance head crafting workshop—a form of intangible cultural heritage—at the BOOKS FOR LOVE book fair at Taikoo over the past two weeks, in an event co-organized by Lifewire and the @Charity of Culture Heir Hong Kong Limited.

He JunJie👦🏻, who suffers from the rare disease Succinic Semialdehyde Dehydrogenase Deficiency (SSADH deficiency), lacks the enzyme succinic semialdehyde dehydrogenase. This has led to frequent seizures, hypotonia (floppy body syndrome), severe brain atrophy, cardiopulmonary failure, and kidney disease. His condition has deteriorated again recently.

A group of friends with rare diseases, including Hester Chan (Unknown Rare Disease), Cheng Oi-ki (Tourette Syndrome), Wong Wai-lung (ATAD3A), Mok Ho-cheung (Scoliosis), Young Kwan-chit (Duchenne Muscular Dystrophy), Chen Yau-chun (Hereditary Spastic Paraplegia), Sze Ka-yan (Rett Syndrome), Wai Ling (Myasthenia Gravis), and others, participated in a Two-Tone EL Wire Workshop at Christian Alliance Cheng Wing Gee College in Tai Wai on May 2nd.

Beyond the medical expertise of doctors, the Lifewire family features parents with their own brilliant "medical skills" — specifically, "curing hunger" 🤤. They are always thinking of the Lifewire team 😘 and often bring delicious food 🍳 to visit us at the office 👏. Behind every meal 🥖 lies their most sincere and heartwarming care 🥰.

Kwong Hoi-ki, who lives with neurofibromatosis type 1, a heart murmur, and Moyamoya disease, and relies on a wheelchair for mobility, has seen her condition deteriorate as bone lesions and fibromas growing along her nerves have narrowed her cervical spine, putting her at constant risk of quadriplegia. In mid-April, she finally underwent two high-risk, life-threatening surgical procedures.

Lifewire and a group of rare disease families escaped the hustle and bustle of the city and headed to the Charity Farm in Yuen Long.