‘Heartbreaking to know she is in pain’: Family’s medicinal cannabis plea for girl, 6, with severe epilepsy
- Credit: Archant
Family and friends of a six-year-old with severe epilepsy stepped up their fight for medicinal cannabis to be made more readily available on the NHS - by embarking on a 25-mile walk to raise awareness.
Indie-Rose Clarry, from Clare, near Sudbury, had been taking medicinal cannabis oil prescribed by a private doctors in the Netherlands for her Dravet Syndrome.
The law was changed in 2018 to allow specialist doctors to prescribe cannabis-based medicines where appropriate, but the drug is still not readily available on the NHS.
Unfortunately, due to Covid-19 restrictions, her family have been unable to get Indie-Rose’s medicine and the oil ran out more than eight weeks ago.
According to her mother, Tannine Montgomery, Indie-Rose has seized every day since it ran out. When she was taking the medication, she had seizures just four times a month.
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Tannine, aged 31, led the walk from Bury St Edmunds Abbey to Clare on Sunday, June 21 and said: “The walk went really well and the weather was good, though we accidently went the wrong way and did 25 miles instead of 20!
“We did it to raise awareness for Indie-Rose because when she has a seizure her body feels like it has walked 25 miles – it takes such a toll on her.
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“It is heartbreaking to know she is in pain and that there is medication available to make it stop.
“Now everyone is pain, they know what it feels like for her.”
The six-year-old has been left feeling tired and grumpy as her body is put through the distressing ordeal of seizures every single day.
Relatives of Indie-Rose have sent a petition to health secretary Matt Hancock, but decided to hold the walk while they wait for answers.
The mum added: “Though cannabis can’t rid her of her condition, it can seriously alleviate her symptoms and drastically changes the quality of her life.
“Before this, she had a great school attendance record and was doing really well.”
The walkers on Sunday observed Covid-19 guidelines to make sure they stayed socially distanced at all times.