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Family of epileptic girl from Clare vows to continue fight after application for medical cannabis denied


By Priya Kingsley-Adam


Clare, Suffolk. A series of fundraisers are being held in Clare to raise money for local girl Indie-Rose Clarry, who has Dravet Syndrome, a rare genetic condition which causes epileptic seizures. Her parents, Tannine and Anthony, are hoping to take her to Holland, where she can be treated with cannabis oil, which has been found to be an effective treatment for epilepsy also pictured young Greyson. Picture by Mark Westley (2261671)
Clare, Suffolk. A series of fundraisers are being held in Clare to raise money for local girl Indie-Rose Clarry, who has Dravet Syndrome, a rare genetic condition which causes epileptic seizures. Her parents, Tannine and Anthony, are hoping to take her to Holland, where she can be treated with cannabis oil, which has been found to be an effective treatment for epilepsy also pictured young Greyson. Picture by Mark Westley (2261671)

The parents of a young girl with a rare form of epilepsy have vowed to continue their battle, after an application for medical cannabis was refused.

Four-year-old Indie-Rose Clarry suffers from Dravet syndrome, a genetic condition that causes frequent and debilitating seizures, leaving her with poor co-ordination, declining cognitive skills and hypomobility.

Her parents, Tannine and Anthony, of Maxim Lane, Clare, took their daughter to Holland for treatment, where CBD oil – a derivative of the cannabis plant which is an established and fully-regulated medication in the Netherlands – has significantly improved Indie’s condition.

Mr Clarry explained the condition had caused Indie distress and sleep deprivation.

“Before we went to Holland, she was having seizures every day,” he said. “It could be quite nasty, so every seizure has potentially been life threatening.”

Since taking the oil, Indie’s parents and doctors have noted a dramatic change in her condition.

Mr Clarry explained the seizures had significantly reduced and, if she experiences one during the night, she is now able to sleep through.

“It has a knock-on effect,” explained Mr Clarry. “She has more fun, she runs around, which she couldn’t do before, and plays with her brother, which, for us, has been quite amazing.”

Indie’s parents are now desperate to be granted CBD oil as a prescription drug in the UK, but their application for a licence has been declined.

Following a recent case, Billy Caldwell, a 12-year-old boy with a rare form of epilepsy, was granted an emergency licence by the Home Office, which enabled him to be treated with medical cannabis in the UK.

The Government has since set up a panel of experts, which is responsible for providing licences following successful applications from senior doctors.

The family’s efforts to secure a licence have been inspired by Alfie Dingley’s case, a six-year-old boy from Warwickshire, whose mother was granted a special licence by the Government to bring medical cannabis into the UK.

Indie’s parents applied for a prescription as soon as they returned from the Netherlands, but had not anticipated the obstacles involved.

“We thought the process would be relatively smooth,” said Mr Clarry.

The couple had hoped their application would be successful and are now considering a return trip to Holland in order to replenish their supply of CBD oil.

“We’re going to have to go back ourselves,” said Mr Clarry, who blamed the Home Office for providing them with no other options.

“They are effectively making us break the law to keep our child safe.”

Since Indie’s condition came to light, the community in Clare has rallied round and raised funds through various events, which enabled the family to travel to Holland.

To support Indie, donations can be given online by going to www.gofundme.com/indierose.



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