They say not all superheroes wear capes, but for a Dubai-based mother, she’s proving it doesn’t take a hero to give back to those who need it the most.
That’s the story of Emily Ray, who’s four-and-a-half-year-old son Sam was diagnosed with the Angelman Syndrome in 2017, a rare disorder estimated to be 1 in 15,000 live births. Ever since she’s been a vigorous campaigner about the malady and is on a role to spread awareness about it.
One of Emily’s notable achievements was getting the Burj Khalifa to light up its facade in blue to mark Angelman Syndrome Day last weekend, gathering thousands of residents in Downtown to view the light show. Here, she chats with Desi Scene Dubai about the Angelman Syndrome and how she reached out to Burj Khalifa for the light show:
Tell us about the Angelman Syndrome
Angelman Syndrome is a rare, genetic condition which affects 1 in 15,000 people. It is characterised by a lack of speech, cognitive impairment, developmental delay, low muscle tone, low immunity, possible seizures and sleep issues. It is caused because gene UBE3A is not being expressed properly and this affects brain function. There are also facial features such as gaps in the teeth and a wide smile.
Talk us through your campaign in spreading awareness about Angelman Syndrome in the UAE
Sam was diagnosed with Angelman Syndrome and it was a total shock. I was with my mother and neither of us had ever heard of it. I reached out immediately via Facebook groups to other Angelman Syndromes forums and groups and started to learn about it. I then posted a message in a Mums FB group in the UAE and someone put me in touch with two other AS mums. From then on, I decided to start raising awareness of this rare condition, via posts with photos and videos so that other people could start learning more about it and about Sam.
When did you discover your son was diagnosed with Angelman Syndrome and how did it change you as a parent?
Sam was diagnosed on 6th April 2017 and it was a totally life changing moment. I had written everything out which was affecting Sam, e.g. he was awake 4 or 5 hours a night, he wasn’t talking, crawling or walking, he was flapping his arms and smiling a lot. We grieved for about 6 months for a child who is still here, which is a very strange feeling. You are grieving the loss of hopes and dreams and what you thought his life would be like and what our family’s life would be like. When I could talk about him without crying, that’s when I knew things would be okay.
What’s your take on the UAE’s efforts to help people of determination?
There are some great initiatives in the UAE for people of determination, such as the access boardwalk at Kite Beach. I would love to see more of those all along the various beaches, to really increase accessibility in different areas. Shops such as Carrefour make our life easier by having Caroline’s Carts in which Sam can sit when we go shopping and priority checkouts for people of determination. The UAE is trying hard to improve services and conditions for people of determination, in various fields, and we appreciate those.
How did you reach out to Burj Khalifa and who were involved in helping your way through?
I had the idea of seeing if Burj Khalifa could turn blue at about 2pm on Wednesday 12th February. By 8pm that night, I was debating whether or not I should go for it. It did feel like a crazy idea! So then I started sending out a message via Facebook across a few groups, as I had no idea who would see it given that there are different people in different groups. Some very kind people sent me contact names and details. So on Thursday morning, I started reaching out.
Tell us about the moment Burj Khalifa agreed for the light show and the evening your family were invited to the tower
At 6pm on Thursday 13th February I was in a shop getting a blue t-shirt for Sam to wear to the little AS meet up that we had planned for the Saturday. The Burj Khalifa representative called me and I couldn’t really believe it as actually going to happen. They then said that they wanted to take photos, shoot videos and interview me. Oh my goodness. I had not envisaged that.
Judging by the videos, Sam’s reaction to the lightshow was absolutely adorable! What were the reactions going on around people watching the light show?
Sam loves people and he is relaxed in a wide range of situations, so he wasn’t phased. He was surrounded by some of my friends and colleagues and he was totally at ease. He had had fun running round the wide open space, getting and giving hugs. Everyone around us was really excited and supportive, they thought it was absolutely fabulous when it lit up. I was overwhelmed.
Lastly, what’s next in your campaign to spread awareness about the Angelman Syndrome?
There is a small group of AS families in the UAE and we are going to meet up soon to create a strategy for how to move forward with regards to continuing to raise awareness of AS, both in the UAE and maybe internationally.