She’s never been able to wish him happy Father’s Day but devoted Byron Lai has cared for daughter with rare condition for eight years
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.
It occurs in roughly one out of every 10,000 baby girls born around the world and is believed to occur as a result of mutations in the gene MECP2.
Samuel Yeung Yuk-yip, who chairs the Hong Kong Rett Syndrome Association, which supports affected families and aims to spread awareness and understanding of Rett, said one problem was that the disorder was often confused with autism at early stages. His own daughter, six, was diagnosed at 19 months.
“Slowly the child will begin unlearning things learned and then as parents desperately try to find answers to treat autism, they are hit with news that its Rett syndrome.”
It does not help that there is no specialist care in the city for Rett.
Lai described the helpless experience of the early years as akin to being “lost in a desert”. He admits that both he and his wife had contemplated suicide but have since managed to overcome the depression.
On Sunday, both fathers and about eight other families had their “wishes fulfilled” as part of a pilot Junior Chamber International programme to promote awareness of rare diseases.
Lai was given a back brace for Ting Ting’s scoliosis and Yeung was one of three other families awarded free Hong Kong Airline tickets for a holiday in Osaka.
“My only Father’s Day wish is for her to be able to live as much of life like a normal person,” said Yeung.
He also hoped the government could provide more financial support for Rett rehabilitation.
Lai added: “I just want Ting Ting’s condition not to get worse, and for her to live happily and comfortably.”