Supporting Jeans for Genes: the Clarksons’ Story

We meet the Clarkson family to find out how the work of Jeans for Genes has helped them and their son Evan.

Lands’ End are proud sponsors of Jeans for Genes Day 2017 and throughout the month of September we will be giving £5 from the sale of every pair of adults’ jeans, £2 from the sale of every pair of kids’ jeans and £1 from every denim monogram to the charity. Jeans for Genes help Genetic disorder-specific charities and patient groups to deliver insipiring projects and support services to families who need it.

One family who knows all about Jeans for Genes and the amazing work they do is the Clarkson family from Melton Mowbray, a market town just down the road from our Lands’ End Headquarters in Oakham.

Evan Clarkson (7) was diagnosed with Angelman Syndrome, a genetic disorder which affects the nervous system, leading to both mental and physical disability, when he was just a year old.

Knowing something was wrong

His mum, Kerry explains what led to his diagnosis: “We first started to notice when he was a couple of months old; my cousin had a baby at a similar time and things were so different for us. At first we thought he might be blind but the panic really set in when he was 4-6 months old and the only milestone he met was smiling. We started regularly going to the doctors and were repeatedly told not to panic. At the time it was really frustrating but now I understand why.

“I’d gone back to work after six months and nursery were saying ‘yes we believe you have a problem’, but still we were told not to panic. It wasn’t until his one year check that things started to happen. He couldn’t sit independently, couldn’t pick anything up, made very little noise, he’d only just learnt to roll. We were then referred to a host of specialists.

The diagnosis

“When the tests started we were horrified, they needed so much blood. We were going to the hospital weekly for blood tests. Endless MRI scans, needles in various places, including his head. The GP explained that this was why she was trying to hold us off.

“Eventually we were called in and given the news, Evan was 18 months old. He had Angelman’s syndrome. To be honest, it was a relief, finally knowing. I had felt like I’d been fighting invisible monsters before, but now I had something to go for. Shortly after, we were both tested for it but neither of us were carriers, it was just ‘one of those things’.”

We are so lucky to have them both

Whilst undergoing the genetic testing, Kerry and Wayne had a lovely surprise. They found out they were pregnant with Logan, now 4. “We were obviously frightened. What if he had the same thing? But we had him tested and he didn’t. We are so lucky to have them both and Logan is brilliant with Evan, he has given him a huge boost developmentally and they adore each other. Logan is a whirlwind but he’s pure sunshine! Having a special needs child is very isolating, sometimes it’s easier to hide, but having Logan forced us to go out and face it, having him has made us stronger.”

Six years on, and Evan is a smiley, happy boy, but the care he requires is intense. Kerry says: “He can crawl but not walk, he needs to be fed, dressed. We literally do everything for him. The hardest bit is the epilepsy. It is complex and requires three different daily medications. He also doesn’t sleep, most nights only 4 hours, that’s mentally and physically draining.”

How Jeans for Genes helps

Kerry is his full-time carer. But she explains that the support they get from various places, including the work of Jeans for Genes, helps them through. “Assert is the charity that supports us most and it relies on funds from umbrella charities like Jeans for Genes. Having a child with a syndrome like Evan’s can be frightening, particularly when the epilepsy is bad – we have been hospitalised a fair few times now. Having someone to talk to at three in the morning, going to social events, sharing the achievements as well as the hardships, it is all so important to us. Even through the dark times, we know we’re not alone, thanks to the support from charities like Assert and Jeans for Genes” says Kerry.

For our photoshoot with the Clarksons, we dressed them in Lands’ End clothes, including jeans which they had monogrammed with words and pictures that expressed their unique personalities. Evan had his name and a smiley face because his name in sign language is the letter E and a smiley face, plus, he is a real smiler. Younger brother Logan is a budding Leicester Tigers fan, hence his. Dad Wayne is a big Liverpool fan and their famous motto ‘You’ll never walk alone’ (YNWA) is even more significant for him since having Evan. Kerry had her name in pink, as a reflection of her fun and intensely proud nature.

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