Fundraising dinner dance in Christchurch for girl with rare condition

Esmé Ashton, from Christchurch, started having seizures at six months old and now needs medication that would cost her family around £1,000 a month.

She has been diagnosed with SCN8A mutation, a condition that only affects around 850 people worldwide.

This causes Esmé to have multiple seizures an hour, and she cannot sit up unaided and is registered blind.

Esmé’s mum Carly has tried 15 different epilepsy medications, some of which caused ‘horrendous’ side effects, and none of which have controlled the seizures.

She is not a candidate for brain surgery, and there is no guarantee it would work if she was.

After a long battle, Carly, 36, was able to get the only cannabis-based medication available on the NHS prescribed for Esmé.

“When she got it, it brought a spark back into her little warrior’s eyes and allowed her to reduce other medications that had left her unable to sit up, smile, or even notice the world around her,” Carly said.

“However, as a basic, early-generation medication the benefits were temporary. Esmé’s epilepsy fought back. I am now attempting to access the more advanced cannabis medications that work better and last longer.”

Carly said the only way to access this potentially life-saving medication is through a private prescription.

“£250 will pay for one bottle of cannabis medication formulated specifically for paediatric epilepsy,” she said.

“£120 will pay for a consultation with a paediatric neurologist who is licensed to prescribe this medication to children. A private prescription for Esmé is estimated to cost in the region of £1,000 per month.”

Carly has organised a dinner dance on March 2 at The Nelson Tavern in Mudeford to raise money for Esmé.

It will feature a hot buffet, live music from the Essential Party Band, plus a raffle and auction.

Esmé and her family are being supported by children’s charity Tree of Hope which helps fundraise for children with healthcare needs which cannot be provided by the NHS.

Carly said any extra funds raised will be used for ongoing specialist physiotherapy to help Esmé regain motor function lost due to her epilepsy.

Tickets cost £20. For more information, search ‘Esmé Ashton’ on the Tree of Hope website.