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 â€“ a derivative of the cannabis plant which is an established and fully-regulated medication in the Netherlands â€“ has significantly improved Indieâ€™s condition.
Mr Clarry explained the condition had caused Indie distress and sleep deprivation.
â€śBefore we went to Holland, she was having seizures every day,â€ť he said. â€śIt could be quite nasty, so every seizure has potentially been life threatening.â€ť
Since taking the oil, Indieâ€™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.
â€śIt has a knock-on effect,â€ť explained Mr Clarry. â€śShe has more fun, she runs around, which she couldnâ€™t do before, and plays with her brother, which, for us, has been quite amazing.â€ť
Indieâ€™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 familyâ€™s efforts to secure a licence have been inspired by Alfie Dingleyâ€™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.
Indieâ€™s parents applied for a prescription as soon as they returned from the Netherlands, but had not anticipated the obstacles involved.
â€śWe thought the process would be relatively smooth,â€ť 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.
â€śWeâ€™re going to have to go back ourselves,â€ť said Mr Clarry, who blamed the Home Office for providing them with no other options.
â€śThey are effectively making us break the law to keep our child safe.â€ť
Since Indieâ€™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.