Hong Kong star couple Stephanie Ho, Fred Cheng share story of son’s Angelman syndrome diagnosis to raise public awareness
- Cantopop stars reveal son Asher diagnosed with rare genetic disorder that causes developmental, behavioural and medical challenges
- ‘We understand that caregiving for a special-needs child can be isolating, and we want other carers to know that they are not alone in this journey,’ Ho says
Hong Kong Cantopop stars Stephanie Ho Ngan-si and Fred Cheng Chun-wan have revealed their son has been diagnosed with Angelman syndrome, in an effort to raise awareness about the rare genetic disorder.
Singer and actress Ho, 31, wrote on Instagram on Saturday that Asher, now two years old, was diagnosed with the condition after being tested last year.
People with Angelman Syndrome tend to have happy demeanours but are non-verbal and prone to seizures, she said.
The condition is a rare neurodevelopmental disorder characterised by the absence of a functional UBE3A gene, and results in developmental, behavioural and medical challenges.
“Finding out about his disorder broke our hearts and we grieved for the healthy child we once imagined, running, playing music, going to college, but it also gave us a clearer direction in ways to support him in the future,” Ho wrote.
“We found out that his condition was randomly genetically mutated and was falsely identified as negative during early pregnancy tests, but this gives us insight into family planning for the future.”
The Hong Kong Angelman Syndrome Foundation said the syndrome was usually not recognised in early infancy since developmental problems tended not to be specific at that period.
The NGO said sufferers were usually diagnosed between the ages of two and five years, when the condition’s characteristic behaviours and features became more evident.
Ho and Cheng said in an online interview that they discovered last year that the progress of Asher’s development was significantly slower than other children his age.
Cheng said the family had originally thought Asher would catch up with a little more time and patience, but later opted for expert evaluation and discovered their son had the rare genetic disorder.
But Ho said the couple could not ask for a more perfect baby.
“Asher is a fighter, and we are very proud of his achievements. We understand that caregiving for a special-needs child can be isolating, and we want other carers to know that they are not alone in this journey,” she wrote.
“Together we must stand up for our children and help them fight for a better future and a better quality of life. We are positive and hopeful that in the near future there will be a cure for this rare disease.”
While there is currently no specific therapy or medications for the condition, clinical trials to discover such options are in progress.
Current treatments generally focus on patients’ symptoms, including medication to help control seizures.
Ho expressed her belief in her son’s strength and resilience, saying she knew he had the power to overcome any obstacles in his way.
“We’ll be forever by your side. We love you so much, baby Asher,” Ho wrote on Instagram.
Hong Kong’s Department of Health said the city had more than 50 recorded cases of Angelman syndrome, with three to five cases being confirmed annually on average over the last five years.
