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With COVID-19 restrictions preventing the family from flying this year, it has been unable to renew Indie-Rose’s medication and she has begun experiencing seizures again.
“We have never wanted to break the law. We felt we had to, to keep Indie-Rose alive, but that option is not even open to us at the moment,” Montgomery told BBC. “I’m not sleeping and my anxiety is through the roof.”
Though medical cannabis is legal in the U.K., the organization that establishes guidelines for the NHS, the National Institute for Health and Care Excellence, notes that there is not enough evidence to recommend cannabis-based medicines for the treatment of severe epilepsy.
As a result of that decision, children like Indie-Rose are getting left behind.
Earlier this month, the family of seven-year-old Sienna Richardson, who has Landau Kleffner syndrome, a rare form of epilepsy, made a plea to the NHS to make medical cannabis products more widely available.
According to Richardson’s mother, her daughter had made a “miracle” recovery after taking cannabis oil. “She is living a normal life, she is still in mainstream school, playing with friends, she is doing really, really well. When we saw her getting better and better, it was amazing,” she said.
But the medication costs about £1,400 ($2,400) per month. The family has joined the campaign, End our Pain and Epilepsy Action, which is calling for increased access to cannabis-based medications for children with severe and treatment-resistant epilepsy.