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Family of Clare girl with rare form of epilepsy hope lobbying efforts will help reform medical cannabis legislation


By Priya Kingsley-Adam


Clare, Suffolk, CO10 8FH..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. (7946257)
Clare, Suffolk, CO10 8FH..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. (7946257)

The parents of a young girl with a rare form of epilepsy remain hopeful that their lobbying efforts for the prescription of medicinal cannabis will help to reform the application process.

Parents Tannine Montgomery and Anthony Clarry have been refused the medication – under new legislation – for their four-year-old daughter, Indie-Rose.

The couple, of Maxim Lane, Clare, joined campaigners at Westminster to voice their concerns over a lack of prescriptions granted since the new legislation was introduced.

The couple spoke to Health Secretary Matt Hancock, who expressed his surprise at the discrepancies with the new law.

“He was sympathetic and said he thought it would be more clean cut,” said Miss Montgomery.

South Suffolk MP James Cartlidge has pledged to meet Indie’s doctor next month to gain more insight into the rules and regulations of granting the medication on the NHS.

“It opened his eyes to the reality of the situation,” said Miss Montgomery, who highlighted the need for clinicians to be educated more on medicinal cannabis.

“I feel sorry for the doctors because it shows that this is a big clinical mess – it’s not down to one specific department.”

Indie-Rose, who suffers from Dravet syndrome – a genetic condition that causes debilitating seizures among other symptoms – has dramatically improved since taking a derivative and component of the cannabis plant, which requires her dad to make frequent trips to Holland.



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