Event held in the city to raise awareness and urge the government to improve treatment and facilities for rare conditions like Rett syndrome
For eight years, Byron Lai Chi-yung has been a devoted father-of-one, but not once has he received a Father’s Day greeting. His daughter, Lai Wai-ting, lacks verbal skills. Ting Ting, as she is known in the family, is also unable to feed herself, go to the toilet unassisted, walk, sit, stand or understand concepts like Father’s Day. She spends most time harnessed to a customised wheelchair, staring blankly into the distance. Scoliosis has caused her spine to warp 50 degrees. The threat of seizures or screaming fits lurk around every corner. “When she was six months old, we realised she was developing much slower than other children and by eight months, she was showing signs of [mental] deterioration, ” said Lai. “At first, she was able to sound out words like ‘papa’ but then suddenly she just lost the ability. It wasn’ t until the age of five was she diagnosed with Rett syndrome.” Ting Ting is one in just over 100 estimated children in Hong Kong to suffer from Rett syndrome – a rare neurological developmental disorder that almost exclusively affects females.
