Clare community rallies to help epileptic girl go abroad for treatment

The plight of a young girl with a rare form of epilepsy has inspired the community to rally around her family, with the goal of helping them go abroad for treatment.

Fundraisers have collected thousands of pounds, with more events planned over the coming weeks, in support of four-year-old Indie-Rose Clarry, whose family hope to take her to the Netherlands for medicine which is not currently available in the UK.

Indie has Dravet syndrome, a genetic condition that causes frequent and debilitating seizures, which has left her with hypomobility, poor co-ordination and declining cognitive skills.

She had been treated with various pharmaceutical medicines that had little effect, but after being given CBD oil – a derivative of the cannabis plant – her parents, Tannine and Anthony, and her doctors observed noticeable improvements in her condition.

However, CBD oil is only considered legal in the UK as a food supplement, and is not available as a prescribed medicine – meaning her parents are desperate to raise funds to go to Holland, where the oil is an established and fully-regulated medication, so they can gain professional guidance.

Dad Anthony, of Maxim Lane in Clare, said they were inspired by Alfie Dingley, a boy from Warwickshire suffering from seizures, who made national news last month when his family applied to the Government to use CBD oil to treat him.

Mr Clarry told the Free Press: “Indie started having seizures at five-and-a-half months old. From that point, she has changed a lot.

“We got genetic testing done and, from that point on, we realised this is a lifelong thing.

“It’s been very difficult. We got used to her having seizures, but it doesn’t get any easier.

“She has had eight different medications and none of them are working.

“Now, she is taking CBD oil, she seems a lot happier and a lot brighter, whereas before she would be in a zombified state.”

Mr Clarry explained that, if all goes well with her treatment in the Netherlands, they intend to petition the Home Office for a licence to take CBD oil in the UK.

As Indie’s story has become known throughout Clare, community groups and businesses have rallied to the cause and a number of fundraising events have been held, including a recent quiz night that raised £800.

On Sunday, a car boot sale is taking place at The Swan Inn, between 9am and noon, and will include a raffle with prizes donated from local shops.

The pub will also be hosting a family fun day on Sunday, June 10, featuring a prize auction and activities for children.

Meanwhile, Indie’s friend, Ivy Williams, who is just seven years old, is running in the weekly Clare Park Run, aiming to complete the five-kilometre course in 30 minutes or less, and she has raised hundreds for the cause.

Mr Clarry said: “I have been around Clare for a lot of my life, so I knew people would be nice, but it’s been a surprise how much people are willing to help.

“They have all been so supportive. We have been overwhelmed quite a few times. It’s a lot of money and we wouldn’t be able to do it without them.”

If you would like to support Indie, you can donate online at www.gofundme.com/indierose.