Dubai-based mother Emily Ray and her family were joined with hundreds of residents to watch the Burj Khalifa glow in blue to mark International Angelman Syndrome Day,
How a mother’s request led the Burj Khalifa to light up in blue
It wasn’t until last Wednesday, 12th February, when Emily Ray posted on an array of Facebook groups requesting for a contact at Burj Khalifa to mark International Angelman Syndrome Day on 15th February, a rare disorder estimated to be 1 in 15,000 live births.
Her four-and-a-half-year-old son, Sam Ray-Elkhodry was diagnosed with Angelman Syndrome in 2017 and Emily has been at the forefront of spreading awareness about the disorder in the UAE.
Within a day, an official from the Burj Khalifa responded to Emily saying “yes” to the light show. On Friday, her family were invited to the building for an interview, following the light show in the evening from 7:40 pm onwards.
Angelman Syndrome a rare neuro-genetic disorder
Newborns with Angelman Syndrome share symptoms from as early as six months. Common symptoms include walking and balance disorders, gastrointestinal issues, seizures and little to no speech, according to the Angelman Syndrome Foundation. On the brighter side, they have an overall happy and excitable demeanour. What’s more, chances of finding a cure for the disorder is high because scientists have identified its causes and have been able to reverse it in ‘mouse models.’ Check out this video to learn more:
Check out the Angelman Syndrome’s website for more details.
(Featured photograph credit: Burj Khalifa)