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Community in Clare rallies around four-year-old with debilitating form of epilepsy

PUBLISHED: 17:45 30 May 2018 | UPDATED: 17:45 30 May 2018

Indie-Rose Clarry, four, who had Dravet syndrome Picture: SUPPLIED BY FAMILY

Indie-Rose Clarry, four, who had Dravet syndrome Picture: SUPPLIED BY FAMILY

Archant

A west Suffolk community has rallied to put on a series of fundraising events for a four-year-old with a rare form of epilepsy.

Residents in Clare, near Sudbury, are raising money for Indie-Rose Clarry, who has Dravet syndrome – a severely disabling type of epilepsy which begins in the first year of life.

The toddler is at times left unable to walk or even chew her food due to the condition and has endured eight anti-epileptic drugs with no response to reducing her seizures.

Villagers in Clare are raising money with the goal of helping Indie go abroad to the Netherlands for treatment.

Olivia Warmington, a friend of the family, said: “Her parents and the local community are raising money to take her to doctors in Holland for advice and treatment with medical marajuana.

“They have been using CBD oil and she has made positive progress but they need expert advice and help to give her the best possible prognosis.”

CBD oil – a chemical produced by the cannabis plant – is only considered legal in the UK as a food supplement and is not available as a prescribed medicine.

The family want to raise funds to seek professional guidance in Holland – where it is fully regulated.

The village’s parkrun event, at Clare Castle Country Park, asked for donations from participants on Saturday, May 19, to raise money.

A separate fundraising challenge at parkrun also took place, with seven-year-old Ivy Williams, a friend of Indie’s, finishing the 5km course in under 30 minutes to raise more than £1,000 for the cause.

Other fundraising events have included a car boot sale and raffle at The Swan pub, a bake sale at the village Co-op – and around £6,000 has been raised so far.

A further day of fundraising is planned on Sunday, June 10, with an ‘Indie-Fest’ event at The Swan from midday to 7pm.

Indie’s parents Anthony, 32, and Tannine, 29, intend to petition the Home Office for a licence to take CBD oil in the UK, should all go well with the treatment abroad.

Anthony said: “Dravet syndrome is very debilitating for Indie, especially when she’s going through a bad patch.

“We’ve had some success recently, which is why we want to take her abroad. We’re very keen to sort the seizures out.”

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