Watch: Angelman Syndrome Day - UAE’s ‘happy children’ make a mark
Over 30 families take part in special event as COVID-19 capacity restrictions are eased
Dubai: Over 30 families participated in a three-km walk at Sustainability City, Dubai, to mark the international Angleman Syndrome (AS) Day on Tuesday, February 15.
Led by Heroes of Hope, a non-profit organisation with support from Sanad Village for Children of Autism and Book Heroes, the walk was held amid the easing of COVID-19 capacity restrictions for public gatherings in Dubai.
What is AS?
Discovered by English physician, Dr Harry Angleman in 1965, AS is a rare genetic disorder that occurs in one in 20,000 children worldwide.
It is linked to a malfunctioning gene in Chromosome 15. Children diagnosed with AS have a small sized head, mental and physical developmental delays, sleep disorders, spastic walk and seizures, but are usually very happy in disposition. AS is condition that needs to be managed, as there is no cure. Those afflicted with AS require life-long assistance.
Egyptian teen Rowdha Al Husseini, 15, the third child in a family of five siblings who came with her mother for the walk, was thrilled to bits.
Her Jordanian mother Fida Al Diyab said she participates in first-aid training and other activities at special needs clubs in the region. ”I instinctively knew there was something wrong with my daughter when she was three months old from the manner in which she suckled abd threw up breast milk after each feed. The early diagnosis at four months helped me prepare better to manage my child .”
A mum’s empathy
Rowdha, who used to have frequent seizures and had to take pills for sleeping, is now pill-free. Al Diyab said, “My daughter’s mental age is that of a three-year-old child, I am thankful that with persistent care, she has been seizure-free for five years.”
She said she had learnt to effectively handle Rowdha’s seizures over the years. “I hold her in the night even when she sleeps. That has helped her sleep without pills and the seizures have stopped. She has been sleeping without sleeping pills for the past five years, and that has also helped her be seizure-free. I want every mother to know that with good management and empathy you can give your child a better quality of life,” she added.
Active campaigner
Rhian Adams, a Welsh expatriate, has been actively creating awareness about AS ever since her two-year-old son Samson was diagnosed with the condition. Adams said: “At the moment, there are at least 23 ongoing therapeutic programmes researching AS. I am hopeful a breakthrough in gene therapy is on the horizon. Creating awareness about AS will help generate more funds and more research.”
Holly Murphy, former school teacher and founder of Heroes of Hope, who has been raising awareness about AS, runs a sports academy for special needs children.
“Every year, we organise this walk to show support to families with AS children and hope for better awareness and education on this rare condition.”
The occasion was marked with gaiety amid a carnival-like atmosphere.
Children were treated to a variety of games, refreshments and other activities.