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The adrenaline in the last 48 hours has been overwhelming for British mum Emily Ray, who has a son with Angelman Syndrome (AS).
The Burj Khalifa lit up in bright blue at 7.40pm on Saturday for four-and-half-year-old Sam Ray-Elkhodry and all other people with AS to mark the International Angelman Syndrome Day.
When it rained blue, Emily couldn't control her tears. She was sharing her joy with many, most of them meeting for the first time, for a noble cause creating AS awareness next to the world's tallest man-made structure.
Affecting only one in 15,000 people, AS is a complex genetic condition that "causes specific facial appearance, severe intellectual and developmental disability, speaking problems, balance and movement problems, seizures and sleep problems", Emily told KT earlier. "Almost nobody knows about AS and we would like to change that, in a big way."
A dream fulfilled
Whenever the Burj Khalifa lights up for various causes, Emily could not help but wonder if it was possible to mark the global occasion for AS.
The schoolteacher wanted to create more awareness about the rarest of the rare condition and posted her wish on social media.
Active social media users took to Twitter to get in touch with Emaar and the Burj Khalifa team. And within 24 hours, Emily realised her dream was about to come true.
She asked people to join the occasion by wearing blue and asking her as many questions as they wanted to understand more about the condition.
Kind gestures
The good gestures of social media users began soon after. Comments and mesaages, including videos, started pouring in for little Sam, whom his mother said is the sweetest and happy child one can ever meet.
Varsha Pherwani, an accessible travel specialist, posted a video to support Emily and Sam.
"I like to be a part of every opportunity that removes barriers for people of determination whether it is a physical barrier that they face on day-to-day basis or it is the perception and perspective of people and their attitude towards people of determination.
"Spreading awareness is the first step to removing the barriers. Emily is an inspirational, powerful and a strong mum who ran an awareness campaign to pull the community in Dubai to raise awareness," she added.
Lisa Lawlor, a people strategist who believes in inclusion, said that when she met Sam for the first time, she graciously hugged him with a huge smile.
"Emily has been a huge inspiration with the positivity she spreads around people. The way she takes care of every need of Sam is amazing. I wanted to support her on this day and came here to watch the Burj Khalifa in blue."
Emily's colleague Kristel Bourgeois said she met Sam first before she met his mum.
"There was a winter fair and Sam was running around with this amazing infectious smile. He is the reason I met his mum and both are soulful beings."
sameeha@khaleejtimes.com
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