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Aylesham: Mother wants cannabis oil for daughter with rare condition

15:45, 14 July 2018

updated: 18:58, 14 July 2018

A desperate mother is seeking permission to give her seriously disabled daughter cannabis oil in what she calls "the last resort".

Eight-year-old Teagan Appleby was born with the rare condition Isodicentric 15, which causes developmental disorders, bone marrow deficiency and increases the risk of epilepsy.

While her struggle has been lifelong, Teagan's mother Emma has noticed a recent worsening in her condition.

Ms Appleby, 34, said: "It's her last resort. They've tried every different drug yet we've still had to go to the hospital five times in the last eight days.

Emma Appleby with her daughter. (3063335)
Emma Appleby with her daughter. (3063335)

"Her condition's definitely deteriorating. It's got worse over the last couple of years, but these last few months have been noticeably bad."

Teagan is currently at Ashford's William Harvey Hopsital after suffering a series of violent fits. Such seizures are common in the majority of people with the chromosomal abnormality. Teagan first showed signs of the neurological disorder aged four, but its severity quickly progressed.

Aylesham resident Ms Appleby said: "There's not much knowledge about Isodicentric 15. Unfortunately it's quite hard to control and 80% of sufferers also acquire epilepsy. Having spoken to many families impacted by the disease, Teagan's quite severely affected in comparison.

Teagan Appleby suffers from a rare condition which causes bone marrow deficiency and epilepsy.
Teagan Appleby suffers from a rare condition which causes bone marrow deficiency and epilepsy.

"People suggest using shop-bought medication from places like Holland & Barrett, but you have to use it very carefully.

"You have to increase dosage slowly if you want to do it right. There's no guarantee they'll work and they could make her worse, perhaps even lead to the worst scenario.

"We've tried other drugs but they didn't seem to help."

The UK government launched a review of cannabis scheduling last month, and is considering licence applications for cannabis-based medication in exceptional cases. Earlier this month medicinal cannabis oil was legally brought into the country for the first time, following the well-publicised situation of six-year-old epilepsy sufferer Alfie Dingley.

Teagan is currently in hospital after a series of severe seizures.
Teagan is currently in hospital after a series of severe seizures.

Ms Appleby said: "There's evidence that it stops seizures and it helps with epilepsy. There are trials being held in England and it seems quite positive, so I'm fighting to get a licence.

"If there's anything I can do for her, I'll fight to do it. Watching my daughter get worse while there helplessly is the worst thing anyone can experience.

"I just felt that I wasn't doing enough, and by trying to get medication that could help at least I've tried, even if the government says no."

"I'm not going to give up until there's a reasonable answer either way. Now it's in the media a lot more, I think medicinal legalisation will eventually happen but I'm worried that it'll come too late."

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