Nearly four decades ago Cheryl Sleight was told by doctors that her beautiful, funny, caring little toddler would be unlikely to live to his mid-teens.
Talking lovingly about her son, Cheryl said: “In true stubborn Robert style, he is here today proving everyone wrong.”
Robert Sleight has previously been described as a “miracle man”, and with his 40th birthday just around the corner, few could argue with that.
At the age of three Robert, who now lives in Loftus, was diagnosed with Duchenne Muscular Dystrophy (DMD). In the early stages, Cheryl remembers him describing “poorly legs”.
One of the most severe forms of muscular dystrophy, the disease has taken its toll on Robert’s body over the years.
He relies on a ventilator 24 hours a day to help him breathe and to improve the quality of his life.
On a trip to Alicante a few years back, the ventilator followed him into the sea- carefully held up high beside him to avoid getting it wet.
With the ventilator, Robert now has enough energy to chew and swallow food, meaning he no longer requires the peg feeding tube that had previously caused him numerous problems.
For much of his life, Robert has had to put his full trust in others, literally putting his life in their hands, due to the 24 hour care he needs.
Robert is still able to talk – Cheryl observes that “a lot of volume comes out of that mouth” – but from his neck down, he only has the use of one finger, which he uses to control his electric wheelchair.
Robert said for him, something such as a simple itch, can be one of the most annoying things when someone has to scratch it for him.
Despite the challenges Robert has faced living with DMD, he has refused to let the disease stop him living his life to the full.
He has crammed a lot of living into the past 40 years. Robert said: “I like to keep busy so I don’t rot away mentally.”
Along with a dynamic sporting and social life, Robert has been an activist for disability rights, attending conferences and speaking to parents of boys who have been diagnosed with muscular dystrophy.
He has also been involved in training doctors and physiotherapists on how to talk to people who use wheelchairs.
From a young age, Robert has always had a natural flare for computer science, games programming and maths.
Since graduating from Teesside University, he continues to enjoy learning through online courses.
Cruising has always been a passion for Robert. So much so that when he turned 30, he threw a casino cruise ship-themed party to celebrate the milestone.
This year, Robert will be turning 40 on 24th June. His party in the Loftus Club the following weekend will be the first big occasion since his cruise themed 30th. He said: “I still feel 25- it’s just my body that’s old.”
With plans well under way for the big event Robert said: “It would be funny if I didn’t make it.”
Roberts friends and family are used to his dark sense of humour and admire him for the positive outlook he has carried through life.
Cheryl said: “Robert has never complained once or asked why me. He just gets on with it.”
Robert said he only knows of one person other than himself who is roughly the same age and still living with DMD.
He said: “I’ve made it this far out of spite and sarcasm. You’ve got to outlive your enemies.”
