Mother of boy with a rare genetic condition sets out to photograph others with disabilities

Em Ray launched her project, Smile with Sam, to show the different challenges and bravery they face

Sam Ray-Elkhodry, 5, suffers from Angelman syndrome, a genetic disorder. A happy demeanour is a core trait of the condition. Courtesy: Em Ray

Kieran Carter, 19, has Down syndrome. The condition causes physical and mental developmental delays and disabilities. Courtesy: Em Ray

Sam with Winston and Sebastian Engwald, a Danish para-triathlete who aims to take part in the Paralympics in Tokyo in 2021. Courtesy: Em Ray

Sam Ray-Elkhodry, 5, with Milly, a deaf white bulldog. Courtesy: Em Ray

Kieran laughs with Sam. People with disabilities are exempt from wearing masks. Courtesy: Em Ray

Sam with Otis. Sam’s condition makes him very tactile, and he likes to touch and hug others. Courtesy: Em Ray

Sam with Timo, a French bulldog who uses wheels to walk as he has an issue with his spine. He was Ms Ray’s inspiration for the project. Courtesy: Em Ray

Kieran with Tyler, who walks on two legs as he does not like to wear wheels. He loves cuddles and human contact. Courtesy: Em Ray

Chester, a brown spaniel, has one eye. Courtesy: Em Ray

Otis, a black and white dog, has a prosthetic paw. Courtesy: Em Ray

The mother of a young boy with a rare genetic condition has set out to photograph people and animals with disabilities, to show how they are "different, not less".

Em Ray's son Sam, 5, has Angelman syndrome, a complex genetic disorder that primarily affects the nervous system and occurs in one in around 20,000 people.

It is associated with delayed development, problems with speech and balance, intellectual disability and sometimes seizures. People with the syndrome often smile, laugh frequently, and have a sunny disposition. It is usually diagnosed at six to 12 months, when a child would start to show cognitive development.

Sam's complex case is "rare within rare", and found in one in every 375,000 cases, his mother said.

After getting over the initial shock, Ms Ray, 46, who is from the UK and lives in Dubai, set about raising awareness of the condition her son faces.

The idea for her picture project came one morning on her way to work, when she spotted a dog in the street walking with the aid of wheels.

“In the time it took me to drive past the dog and get to the little roundabout and go down into the school car park. I turned the car around and I went back and said hello,” said Ms Ray, a photographer and teacher.

“I said you don’t know me, but I have just seen your dog on wheels and I have had an idea. Here’s a little bit about my son. What about if I take a picture of Sam with your dog?”

The idea has since expanded to include other animals and people with disabilities.

People were easy to find.

As member of many groups for parents of children with disabilities, she already knew of plenty.

She feared locating the pets would be more problematic. But within 48 hours of putting out a call for pets with disabilities, the owners of 80 special needs animals came forward.

And they had all sorts of different conditions - some with two legs, others with three, some which were blind, and others which only had one eye.

There were also animals who were deaf and others with neurological conditions.

She has already held three photoshoots, and the images have been shared on an Instagram page called Smile with Sam.

“We would love people to follow it and make this project a household name. They are all different people and animals who we don’t come across in everyday life,” she said.

The idea behind it is to show how everyone is different.

“They are different, not less, at all. And the sense is that Sam doesn’t see people or animals in any way different than just what they appear to be to him,” she said.

“So it doesn’t matter what you do or what you look like, just as it doesn’t matter what an animal looks like to him.

“Every single person and animal is exactly the same. He just wants to meet them. He wants to touch them and he wants to stroke them. He loves people, and smiley faces. He wants to reach out.”