A seven-year-old boy suffers from a rare genetic condition which means he cannot stop SMILING.
Evan Clarkson was born with Angelman syndrome – a chromosome disorder which causes severe learning difficulties – and puts a permanent grin on his face.
The easily excitable youngster always appears happy and smiles or laughs as a result of the rare condition, which affects fewer than 1,000 people in the UK.
Mum Kerry Clarkson, 43, from Melton Mowbray, Leics., said: “Evan is a happy, interested little boy.
“We don’t feel sorry for ourselves, far from it. Despite all of this, he is an incredibly happy and loving child.
“We are fortunate to have him in our lives and have learnt a lot about ourselves from him.”
Kerry, who is a full time carer for her son, discovered Evan’s condition at around two-months-old, when she noticed he couldn’t focus on things properly.
She went to the doctors after realising he was developing far slower than her cousin’s daughter Daisy who was a similar age.
The mum-of-two added: “Evan was a very happy baby but I remember sitting there thinking Evan didn’t reach for things like Daisy had at that age, or track with his eyes.
“My husband Wayne and I thought he might be blind but that was ruled out.
“He wouldn’t reach for objects, he didn’t pick up food until he was over a year old.
“He didn’t make any sounds apart from giggling.
“As the months went by he didn’t attempt to crawl or sit. It was soul destroying.
“As a parent you feel a real sense of panic when your child doesn’t do any of things that other children do.
“Our health visitor told us not to worry.
“We were new parents and we didn’t feel they took us seriously.
“We’d been to the doctors several times but each time they reassured us and told us not to worry.
“We looked online, terrifying ourselves and swore we wouldn’t search the internet again because everything we looked at came with an awful prognosis.”
At ten-months-old, Evan was seen by a paediatrician and had weeks of tests and scans before being diagnosed with Angelman two four months later.
Kerry said: “The diagnosis was our freedom, now that I knew what I was dealing with.
“Up until the diagnosis we felt we were boxing in the dark.
“Yes, it was devastating to know there was something very wrong but we already knew that and knew it wasn’t going to be fixed.
“To give it a name and know what it was, was so empowering.
“The doctors explained Evan’s genetic make-up and that he has a ‘deletion plus’ – which comes with the lowest expectation for a child’s future.
“It’s the worst case scenario. They talked about the challenges ahead.
“We were panicking, but we also had an amazing child, happy, gorgeous and a joy to be around.
“We were actually having a good time with Evan.
“He can’t walk, although he can crawl, and he has quite severe epilepsy.
“Evan has to take three daily medications twice a day and he doesn’t sleep particularly well, probably four hours on average.
“We would love to be able to communicate with him eventually.
“For us it could be using a bit of tech like an iPad which will help us communicate with him.”
Evan’s family have found comfort in the charity ASSERT, a support group which help families of children with the Angelman syndrome.
Kerry, who lives with husband Wayne, 45, and their other son Logan, four, added: “The charity is a lifesaver.
“They have provided information and supported us as a family.
“It is tough, the lack of sleep and there is never a day when it isn’t pointed out by people that your child is disabled.
“Someone stopped me once and pointing to Evan said, ‘You’ll be paying for that for the rest of your life’.
“People also get angry if I park in disabled parking with my little boy in a wheelchair.
“I was totally unprepared for the reaction from other people. As a mum you have to grow a second skin.”
The family are now fundraising for Jeans for Genes Day on Friday (22/9) to help support children with genetic disorders.
To donate visit www.jeansforgenesday.org
Subscribe
If you enjoyed this article, subscribe to receive more just like it.
