Star Wars enthusiasts troop out to raise awareness of rare genetic disorder

Em Ray's son Sam, 6, has Angelman syndrome, a genetic disorder that occurs in one in 15,000 people

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The mother of a young boy with a rare genetic condition is encouraging people to “share their smile” as part of a new photographic project to raise awareness of the disease.

Em Ray's son Sam, 6, has Angelman syndrome, a complex genetic disorder that primarily affects the nervous system and occurs in one in around 15,000 people.

It is associated with delayed development, problems with speech and balance, intellectual disability and sometimes seizures. People with the syndrome often smile and laugh frequently.

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I invite everyone here in Dubai to join this great cause and take this opportunity to meet and smile with this little boy who will for sure, light up your day and remind you what a simple smile can do
Gisele Clark, Hilton Dubai The Walk

It is this sunny disposition which has inspired Ms Ray’s photo project, her second, which asks people to be photographed with Sam doing hobbies or tasks they enjoy.

“My first photo project was him meeting other people of determination and pets of determination,” she said, speaking on International Angelman Syndrome Day on Tuesday.

“Then this year, probably a few weeks ago, I decided maybe we could change the focus slightly," said Ms Ray, a photographer and a teacher who takes the pictures herself.

"So the idea is share your smile. So if you have a hobby or job you really enjoy, that makes you smile, consider sharing that with Sam.”

Sam with Darth Revan in the desert.

Offers have come flooding in, from people with various popular hobbies such as yoga, horseriding, dancing and tennis, as well as some more unusual ones from cinema fans.

At the weekend Sam met and was pictured with members of the UAE Garrison of the 501st Legion, Niima Outpost of Rebel Legion, and Rub Al-Kahli Spire of The Dark Empire.

The groups of Star Wars fans troop, or turn out in costume, to support charities and other good causes. Their appearances are strictly voluntary and they are not for hire.

“We dress up as the bad guys from Star Wars. The motto of our group is 'bad guys doing good',” said Jonathan Howell-Jones, 51, from the UK, commanding officer of the UAE Garrison of the 501st Legion.

The garrison is the largest in the region, with more than 15,000 members around the world, including from the UAE, the UK and Poland.

“We are very much community-focused. We love Star Wars, obviously, but we like to share it with the community and do things in different ways,” said Mr Howell-Jones.

“Where it has been possible, we have tried to troop to support local charities for events. Covid has obviously restricted this. We still try to do things positively, just not Covid-positively. It has been very limited recently. But we are always looking for more opportunities.”

Beatriz Manzano, who troops as Emperor Palpatine, said the legion was happy to support the project and got as much out of it as Ms Ray and Sam.

“You cannot imagine how I felt when Sam connected with me. I felt I could reach the sky,” said Ms Manzano, who is from Spain and has lived in the UAE since 2008.

“I just wanted to pause and linger in that moment. And then it happened again, and again and again and slowly he started to connect with all of us and it was nothing but joy and souls connecting with smiles.

“It made us feel happy, making us feel we can be of service.”

Other participants of the photo project have included Gisele Clark, hotel manager at Hilton Dubai The Walk, who had all her staff dress in blue for the shoot.

“Sam is really such a special young boy. The moment he entered our hotel with that big smile on his face we all felt the warmth and need to smile back. He brings such a positive energy with him,” she said.

“I invite everyone here in Dubai to join this great cause and take this opportunity to meet and smile with this little boy who will, for sure, light up your day and remind you what a simple smile can do. “

Anyone interested in taking part can get in touch with Ms Ray via Instagram.

Updated: February 16, 2022, 5:06 AM
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