Burj Khal­ifa to shine light on rare dis­ease

Khaleej Times - - FRONT PAGE - Dhanusha Goku­lan

dubai — A Dubai-based Bri­tish mom’s plan to raise aware­ness about An­gel­man Syn­drome, a rare neu­ro­log­i­cal dis­or­der that her young son is bat­tling, has fi­nally been re­warded with the Burj Khal­ifa set to light up in blue on Satur­day, Fe­bru­ary 15, In­ter­na­tional An­gel­man Day.

An­gel­man Syn­drome (AS) is a rare, neu­ro­ge­netic dis­or­der that af­fects Chro­mo­some 15, re­sult­ing in in­tel­lec­tual and de­vel­op­men­tal de­lay in kids. Only one in 15,000 are af­flicted by the ge­netic con­di­tion which causes se­vere in­tel­lec­tual dis­abil­ity, de­vel­op­men­tal dis­abil­ity, speak­ing problems, bal­ance and move­ment problems, seizures, and sleep problems.

Emily Ray’s fiveyear-old son Sam Ray Elkhodry was di­ag­nosed with this com­plex dis­or­der on April 6, 2017. Emily, a school teacher, took to so­cial me­dia to raise aware­ness, en­cour­ag­ing peo­ple to ask ques­tions about the dis­or­der. Even­tu­ally, hun­dreds of UAE’s Twit­terati took no­tice and Burj Khal­ifa came for­ward to sup­port the cause.

On Fri­day, Emily shared the good news on her Facebook pro­file. “In honour of my fourand-a-half-year-old son Sam, who has An­gel­man Syn­drome, Burj Khal­ifa will light up in blue at 7.40pm. This is, of course, for all the other AS fam­i­lies in the UAE, around the world, as well as the wider com­mu­nity of peo­ple of de­ter­mi­na­tion.”

He is the most in­cred­i­ble lit­tle boy. His story is an in­spi­ra­tion. For Sam, de­vel­op­men­tal mile­stones are small but sig­nif­i­cantly im­por­tant. He can now take the key, lock the door and open it as well.”

Emily Ray, Bri­tish ex­pat and school teacher

dubai — Af­ter per­sis­tent ef­forts to raise aware­ness about the ‘An­gel­man syn­drome’ — a rarest-ofthe-rare neu­ro­log­i­cal dis­or­der — for nearly three years, a Dubaibased Bri­tish mum’s dream is about to come true to­day.

UAE’s most fa­mous land­mark, the Burj Khal­ifa, will light up in blue colour on the oc­ca­sion of In­ter­na­tional An­gel­man Day to raise aware­ness on An­gel­man Syn­drome (AS) — a rare, neu­ro­ge­netic dis­or­der that af­fects chro­mo­some 15, re­sult­ing in in­tel­lec­tual and de­vel­op­men­tal de­lay. In­ter­na­tional An­gel­man Day is marked on Fe­bru­ary 15 ev­ery year.

Emily Ray, a Bri­tish ex­pat and school teacher, whose nearly fiveyear-old Sam Ray-Elkhodry was di­ag­nosed with this com­plex dis­or­der on April 6, 2017.

Af­fect­ing only one in 15,000 peo­ple, Emily took to so­cial me­dia to raise aware­ness about the com­plex dis­or­der af­ter her son’s di­ag­no­sis, en­cour­ag­ing peo­ple to ask ques­tions about the dis­or­der. On Thurs­day, she shared her de­sire to light up the Burj Khal­ifa to mark the global AS day. Even­tu­ally, the UAE’s Twit­terati took no­tice, and within 24 hours, Burj Khal­ifa came for­ward to sup­port the cause.

Burj Khal­ifa to turn blue at 7.40pm

On Fri­day, Emily was able to share the good news on her Facebook pro­file. “In honour of my four-and-ahalf-year-old son Sam, who has An­gel­man Syn­drome, Burj Khal­ifa will light up in blue at 7.40pm. This is, of course, for all the other AS fam­i­lies in the UAE, around the world, as well as the wider com­mu­nity of peo­ple of de­ter­mi­na­tion,” she wrote.

An Emaar of­fi­cial con­firmed that the world’s tallest build­ing will light up in blue for the cause.

“The statis­tics for Down syn­drome are one in 700 ap­prox­i­mately, and for autism, it is one in 59. Al­most no­body knows about AS and we would like to change that, in a big way,” said Emily, a French teacher and UAE res­i­dent since 2006.

“The ge­netic con­di­tion causes spe­cific fa­cial ap­pear­ance, se­vere in­tel­lec­tual and de­vel­op­men­tal dis­abil­ity, speak­ing problems, bal­ance and move­ment problems, seizures and sleep problems,” she added.

Sam’s achieve­ments since his di­ag­no­sis

“Sam was born in City Hos­pi­tal. When the doc­tor told me he has AS I did not know what that meant. My mum was here on a hol­i­day, and we de­cided to run an In­ter­net search for it,” she ex­plained. “Later, I re­alised it is not a good idea to Google some­thing be­cause it pro­vides the worst-case sce­nario for any given con­di­tion. It said in­di­vid­u­als with AS will never walk, talk or run. All the dreams I had for my child was crash­ing,” said Emily.

Over time, Sam proved the Google wrong. “Since his di­ag­no­sis, he has achieved in­cred­i­ble things. He can run, climb the stairs on his own. Even though he can­not speak, he can com­mu­ni­cate once you learn his lan­guage,” he added.

Sam’s par­ents are now try­ing to teach him to use aug­men­ta­tive and al­ter­na­tive com­mu­ni­ca­tion (AAC) de­vices. “He is the most in­cred­i­ble lit­tle boy. His story is an in­spi­ra­tion. For Sam, de­vel­op­men­tal mile­stones are small but sig­nif­i­cantly im­por­tant. He can now take the key, lock the door and open it as well,” ex­plained Emily.

Sam is al­ways seen smil­ing, and ac­cord­ing to Emily, he ac­cepts ev­ery­one for who they are. A res­i­dent of Mirdif, Sam has fans ev­ery­where in his com­mu­nity. “He high-fives and greets security staff at Mirdif City Cen­tre Car­refour. Their faces light up when they see him. That’s how we would like peo­ple to treat in­di­vid­u­als of de­ter­mi­na­tion.”

Speak­ing about Sam’s in­ter­ac­tion with his six-year-old sis­ter Maya, Emily said: “Sib­lings of kids of de­ter­mi­na­tion are the best. She is the most em­pa­thetic and un­der­stand­ing child I know. She un­der­stands that there are cer­tain things she can’t do when Sam is around. He en­joys pick­ing up every­thing and throw­ing it out and I’ve never heard her com­plain about it.”

Sam’s mom Emily is rais­ing aware­ness about An­gel­man Syn­drome

Sup­plied photo

THE WORLD IS WITH YOU: Thanks to his mum Emily Ray, Burj Khal­ifa will turn blue for Sam, a boy with An­gel­man syn­drome, to raise aware­ness about the rare dis­ease. —

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