A group of seven Oswestry family members and friends have taken on the challenge of having a tattoo to raise money for a young girl with a rare form of epilepsy. Ben Bentley reports.

Karl and Vicki are pictured front centre with their children Lyla,2, and Poppy, 5. Back: Paula Kynsaton, Matthew Turner, Cheryl Evans and Les Evans

Vicki Evans sucks on a lollipop and fixes a faraway stare on a tiny spot on the wall. And then the pain begins.

“If having this tattoo could take away the pain that my daughter has been through – all the needles she’s had, all the tests she’s had – I would do it every day of my life,” says the 35-year-old mum from St Martin’s, near Oswestry, as the logo of an epilepsy charity is branded down her spine.

Her daughter, Poppy, five, suffers with a severe form of epilepsy that is life-threatening and incurable.

But in an indelible show of support, while Poppy is at school, seven family members and friends have nipped out to have a tattoo to raise awareness of her condition, known formally as Dravet Syndrome, which is complicated with autism, learning difficulties and makes it difficult for the youngster to walk.

Having a tattoo of any kind requires considerable commitment, but in the case of Vicki Evans and her family, that commitment is permanent.

With trepidation tempered by the knowledge that they are doing something positive for the cause, one by one they go under the needle to be branded with a butterfly logo that represents Dravet Syndrome UK, the charity dedicated to improving the lives of those affected.

Sponsorship raised through having the tattoos – which already tops £1,000 – will be presented to the charity to help pay for research. The bold family act is to mark Epilepsy Awareness Month.

At Fine Line tattoo studio in Oswestry, a cousin follows an auntie follows a friend follows a mum and a dad. Even Poppy’s grandma, Cheryl Evans, has one done.

“I don’t know whether she knows what she’s let herself in for!” says Vicki.

Poppy had her first seizure at the age of just six months. Progressively they became more severe, peaking at up to 40 a day.

“The longest seizure lasted two-and-a-half hours,” says Vicki as her tattoo progresses.

“It started at home and we called the ambulance and she was taken to hospital.

This is the Dravet Syndrome UK symbol

“I thought she was going to die. She had had lots of seizures before but that was the worst. I just felt helpless, like I had no control over it.”

Statistics indicate there are as many deaths from epilepsy as there are from breast cancer. Furthermore, people with Dravet Syndrome are also prone to sudden, unexplained death in epilepsy.

“They are more at risk of dying than a ‘regular’ epilepsy sufferer,” continues Vicki. “Patients with DS only have 85 per cent chance of reaching adulthood.”

Today, Poppy has to take three different forms of drugs twice a day to reduce incidences of seizures. Her wellbeing is a continual concern for Vicki, her husband Karl and the rest of their family and friends.

“I’m living with fear every time she goes to sleep. You worry that you are going to go into her bedroom in the morning and not find her alive. It is terrible,” continues Vicki.

“I sleep with two baby monitors – one just in case the other doesn’t work – and a seizure mat under Poppy’s bed which sets off an alarm if she goes into seizure.

“She also sleeps with anti-suffocation pillows which would prevent her from suffocating if she ends up face-down.”

How does little Poppy deal with it all? Vicki shakes her head. She knows nothing different, her mum says finally.

“She accepts that she might be in the school playground one moment and the next wake up in hospital – but when she does it’s with a smile on her face. She is a warrior.”

As the tattoos progress, the pain of having them is put into perspective. In another room, Karl is grinning and bearing it as the buzz of the needle fills the air.

The tattoos may be long-term, but mum Vicki has learnt not to look into crystal balls.

She says: “I’ve learnt to live in the here and now. I file bad days away and grasp good days with both hands. I live those to the maximum.”

As her friends and family endure the pain of being tattooed, Vicki becomes overwhelmed with emotion by the united show of support for her daughter.

“It makes my heart want to burst,” she says.

No pain, no gain. That’s how dad Karl Evans, 32, looks at it as the needle descends on the inside of his left forearm, next to an existing tattoo of his Poppy’s name.

“I like to breathe out on the stroke of the needle, I find it works better for me,” he says.

Karl under the needle at the Oswestry studio

“We are having the tattoos done where they are visible so that people will see them and hopefully ask what they are.

“When Vicki came up with the idea, my reaction was ‘Definitely – where do you want me to have it?’

“Poppy has had so many needles in her life that one 40-minute session is nothing to what she has been through in five years of her life.

“It’s just a little something we can do to raise awareness, and it’s nice that it’s permanent – it’s there for life, just like our daughter will be.

“She’s amazing, she really is. When you think about what she’s been through – having seizures, learning difficulties, problems walking – and yet we’ve been with Poppy when she’s in hospital and she’s lying on the bed and has wires coming out of here, there and everywhere, and you walk up to her, look at her, and she smiles. . .

“Anything we can do to stand by her that bit more I will happily do it. She is an angel.”

* A £2 donation to the Evans’ family cause can be made either by texting TFMJ50 £2 to 70070. Donations can also be made by visiting www.justgiving.com/Vicki-Evans/

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