Abu Dhabi, UAEMonday 6 April 2020

Burj Khalifa lights up blue to put spotlight on rare genetic condition

The move was in recognition of British mother and campaigner Emily Ray, whose son Sam has the disorder

The Burj Khalifa turns blue to mark international Angelman Syndrome Day. Chris Whiteoak / The National
The Burj Khalifa turns blue to mark international Angelman Syndrome Day. Chris Whiteoak / The National

Burj Khalifa lit up blue on Saturday night to put the spotlight on a little-known genetic disorder and the campaign of a British mother.

Angelman syndrome affects just one in 15,000 people worldwide and is caused by a loss of genetic function.

One of those living with the condition is four-year-old Sam Ray-Elkhodry who was diagnosed with AS in April 2017.

His mother, Emily, has since campaigned across the country and on social media for greater understanding of the disorder.

Sam’s happy nature is actually part of the syndrome and he loves people and gives fantastic hugs when he learns new things

Ms Ray

“AS is very rare and hardly anybody knows about it,” said Emily, a teacher who lives in Mirdif with her Egyptian husband, Hithame, Sam and daughter Maya, five.

“Sam has AS because he has two copies of the same paternal chromosome.

“Only three to five per cent of people have AS because of that, so his condition is particularly rare.

“My mother was with me on the day he was diagnosed, we were in total silence and shock.

“The next few months were a blur as we were grieving for a child that is still here.”

AS is usually noticeable within a year of birth and impacts just 500,000 people around the globe.

Those with the condition can have difficulties walking and balancing. Seizures as well as little or no speech can also be common.

Children with AS can grow up to live long and happy lives, but often require supportive care for chronic disabilities.

To increase understanding of AS and its impact on families, Ms Ray has achieved a long-held ambition to have the Burj Khalifa lit up in blue.

Blue is the universally recognised colour for the Angelman Syndrome Foundation and the Burj Khalifa will be lit up at 7.40pm on February 15 to mark International Angelman Syndrome Day.

The foundation is named after English physician Dr Harry Angelman who first identified the condition in 1965.

Sam’s biggest fan is his older sister Maya, who helps him with the simple things in life that most young children have to deal with.

His development may be slower than others his age, but Sam has made recent progress like turning a key in a lock and opening a door.

Sam’s parents are now teaching him how to use augmentative and alternative communication devices to supplement his impaired speech.

“Sam’s happy nature is actually part of the syndrome and he loves people and gives fantastic hugs when he learns new things,” said Ms Ray.

“He is now able to climb up a ladder and go down a slide in the park by himself. He can put a basketball in a hoop, all huge milestones for him.

“He takes parts in walks and runs, sometimes managing about two kilometres. I have been raising awareness constantly since his diagnosis.

“The number of people with AS in the UAE is obviously very small but because of my social media posts, total strangers come together asking about doctors, therapies, requesting support and help.”

Maya Ray-Elkhodry, 5, with her brother Sam, 4, who has Angelman syndrome. Courtesy: Emily Ray
Maya Ray-Elkhodry, 5, with her brother Sam, 4, who has Angelman syndrome. Courtesy: Emily Ray

Updated: February 16, 2020 10:38 AM

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