How parents adapted to son’s chromosome disorder

Rio Watson, 12, suffers from '1q44 deletion denovo syndrome', which causes severe physical disabilities and affects his ability to speak and his motor skills.

ABU DHABI // Rio Watson has a chromosome disorder so rare that it affects only a handful of children worldwide.

Rio, 12, suffers from “1q44 deletion denovo syndrome”, which causes severe physical disabilities and affects his ability to speak and his motor skills.

For his mother, Briton Delphine Watson, these are not the traits that define her son.

“He is special because he is a beautiful, very happy, loving little boy,” said Ms Watson, 41, who has lived in Dubai for 19 years. “He lives only in the now and has full appreciation for life. He has much to teach us all in life.”

She and her husband Nick, 46, did not realise there were any problems with their eldest child until his first seizure when he was six months old.

Doctors were baffled. It was only when Rio turned 4 that genetic specialists in France determined his condition. With so little known about the disorder, Ms Watson fears for Rio’s future.

“As I see it, I will either be a 70-year-old woman changing a 40-year-old baby’s nappy or I will be attending my own child’s funeral,” she said. “Neither of those are acceptable in my eyes.

“If Rio outlives me, I truly fear for his future without me. I try not to go to thoughts of the future, it is painful.”

While she believed society was now more aware of disabilities, more acceptance was needed.

“The stares when you go out are very difficult, but then I do understand if disabilities are not part of your everyday life, it may be hard to understand a situation you are witnessing,” she said.

“However, I would always much prefer people to ask me questions rather than stare.”

Rio’s strength inspired Ms Watson and her husband to create the foundation Reaching You in 2006, to raise awareness of children with special needs, and set up the family event #TeamAngelWolf, which involves sporting and racing challenges.

Rio and his father have done 21 races in the past two years, with Mr Watson swimming while dragging Rio in a kayak, cycling with him on an adapted bike, running while pushing his wheelchair, or racing upstairs with Rio strapped to his back.

Mr Watson said that being the father of a child with special needs was hard but one day he realised he could still find ways to bond with his son.

“There was no reason why I couldn’t do rugby, a triathlon, have a ‘father-son’ conversation – it just had to happen a little differently to my expectations and to society’s norms,” he said.