A father with just one year to live has spoken of his joy at receiving a first ever hug from his autistic son before he dies. Ewen, seven, who has non-verbal Autism and struggles with physical contact, reached out to embrace his father, Richard Johnstone, 49, in December 2022.
The touching moment came after Richard had been at a ''particularly draining'' hospital appointment receiving antibiotics via IV drip, which Richard has to have regularly to prevent kidney failure. The dad-of-five was born with a rare genetic condition has been battling liver and bowel failure for over 33 years but has been given a year to live after doctors discovered last year that he has bladder cancer.
Richard, who lives in Bedworth, West Midlands, was diagnosed with Familial adenomatous polyposis (FAP) in 1986 - aged just 13. The rare condition is caused by a fault in the APC gene that increases the risk of developing bowel cancer.
Since being diagnosed, Richard has multiple surgeries to help prevent the onset of deadly cancers as his body cannot do that for him. But in December 2022, medics at University Hospital of Coventry and Warwickshire, West Midlands, diagnosed Richard with bladder cancer and predicted he only had 12 months left.
Despite the bad news, Richard, an IT technician, has been given a ''new lease of life'' by the touching gesture from his severely autistic son. Richard, who is married to Susan Johnstone, 48, said: "I'd gotten back from the hospital and was pretty done in and Ewen came over to me and just put his arms around me.
"For some, this might not be a big deal, but for us its mega. Ewen has non-verbal autism and doesn't do things on his own.
''He also doesn't have the usual social cues and physical contact doesn't come naturally to him so this hug meant the world. After I got that hug, it was like something changed in me- I was even able to eat my favourite tea, steak and chips which was the first time in two and a half years.
''It's been hard for us all since my cancer diagnosis from last year but having this hug made it all go away for a moment."
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Since his diagnosis as a teen, Richard, has had his large intestine removed, a stoma bag installed and rectum surgery in 2005. In 2020, he half of his pancreas removed, as well as his gall bladder, some of his small intestine and part of his stomach.
As a result of having gut failure, Richard has had a drip that feeds him and provides necessary vitamins for the last two years, as well as antibiotics from a drip to prevent kidney failure. But despite his medical issues the family were shocked and ''devastated'' when Richard was diagnosed with bladder cancer and given just a year to live.
The cancer has now spread to his large intestine and kidney. He said: "Even though my doctors aren't able to tell me exactly how long I've got left, I know I'm coming to the end of my life.
"Whilst I'm glad I'm still here, all I want is more time with my family.''
Richard and his wife Susan, who knew each other at school, reconnected over Facebook in 2014. They welcomed their first child together, Ewen, in January 2016 and then got married in March 2017.
"I have four other children from a previous relationship and Susan has two of her own also,'' he explained. "So, whilst we weren't new to parenting when we had Ewen, it was like we had to learn how to be a parent again because he required different things.
"We first started to notice Ewen's autism at around two-years-old as he wasn't speaking and struggled with physical contact with people who weren't close family. He'd also only watch the Minion movie and would even speak like a Minion.
''As comfortable he is with my wife and I, a hug isn't something he'd give us voluntarily because he's doesn't show affection through physical touch. So that first hug was so special because it's like Ewen knew I needed one.
''The tricky part is explaining it all to him but we've been really honest. He knows that his dad isn't well and not to touch my tubes- he's taken it really well which is a relief.
"He's an amazing little boy but he was definitely different. He was officially diagnosed at the age of three and since then we've really had to learn how Ewen functions and how is best to communicate with him.
''Susan and I would have to ask for a hug before bed but to have him hug me voluntarily, it was amazing. It takes a lot of patience and you have to stay calm because autistic children do not respond to shouting or a raised voice.
"Ewen has a lot of what we like to call 'magic moments' as we don't like to call them meltdowns. We've never been upset for Ewen because he's amazing, autism just means he experiences the world in a different way to say you or I.''
Despite keeping a close eye on Richard, medics aren't able to give an exact time frame for his future. He said: "Even thought I'm on limited time, there's no point stressing out about it!
"I'd love to have a pint with Ewen when he's 18 but what's happening is happening and we've got to just accept it. If I lament on it, the last year of my life won't be the best, so I've got to make the most of the time I've got left.
"Every day is a bonus and every hug I get from Ewen means the world."