Parents of girl from Clare with rare form of epilepsy set to join medical cannabis lobbying effort at Houses of Parliament
The parents of a four-year-old girl with a rare form of epilepsy are lobbying the Government over the prescription of medicinal cannabis, after their daughter was refused the medication under new legislation.
Indie-Rose Clarry suffers from Dravet syndrome, a genetic condition that causes prolonged seizures, leaving her with poor co-ordination, hypomobility and declining cognitive skills.
Before receiving treatment from a neurologist in Holland, Indie had suffered daily seizures and sleep deprivation, among other debilitating symptoms.
Since taking CBD oil – a derivative of the cannabis plant, which is a fully regulated medication in the Netherlands, together with the component THC – Indie’s parents, Anthony Clarry and Tannine Montgomery, of Maxim Lane, Clare, have noticed a significant improvement in her condition.
They are now calling on the Government to review the application process for medical cannabis, and on Tuesday, they will join other families affected by epilepsy at Westminster, with representatives from End Our Pain, which campaigns for medical cannabis in the UK.
“Indie has just got better and better,” said Miss Montgomery.
“Her quality of life has improved tenfold – she is eating so much more, she is running and she is going to school four days a week.”
In the past month, Indie has suffered just one seizure – a marked improvement from five months ago, which has provided some comfort to her parents.
“I’m not frightened to death all the time now,” said Miss Montgomery.
Following a series of high-profile cases, new legislation was introduced to enable clinicians to prescribe medicinal cannabis on the NHS for certain conditions, including severe forms of epilepsy and side effects of chemotherapy.
CBD oil, which is known as an epidiolex, is not yet licensed in the UK, but can be prescribed for conditions such as Indie’s.
After applying for a prescription, her parents were informed by a doctor that their application had been refused.
To purchase the medication, Mr Clarry must travel to Holland, while raising £1,500 a month to cover the cost of the medicine.