A Christchurch mum is holding a fundraising dinner dance for her three-year-old daughter who has an extremely rare condition which causes her to experience around 100 seizures every 24 hours.
Esmé Ashton, 3, who lives in Christchurch with mum Carly, 36, and brother Arthur, 5, started having seizures at six months old and was eventually diagnosed with SCN8A mutation, a rare genetic condition affected only around 850 people worldwide. She cannot sit up unaided and is registered blind.
The family has tried 15 different epilepsy medications, some of which have caused horrendous side effects, and none of which have controlled the seizures. Esmé is currently not a candidate for brain surgery and even if she was, there is no guarantee it would work.
After a long battle, Carly managed 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,’ said Carly.
‘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.
‘The only way Esmé will be able to access this potentially life-saving medication is if she can secure a private prescription. £250 will pay for one bottle of cannabis medication formulated specifically for paediatric epilepsy. £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 £1000 per month.’
‘Any extra funds raised will be used to pay for ongoing specialist physiotherapy to help Esmé regain the motor function she has lost due to her epilepsy.’
The dinner will take place at The Nelson Tavern in Mudeford on March 2 from 7pm, with a hot buffet, live music from The Essential Party Band, plus a raffle and auction of lots including a weekend carp fishing in France and a stay at Hoburne Caravan Park in Christchurch.
Esmé’s family is being supported by children’s charity Tree of Hope which helps families fundraise for children like Esmé with healthcare needs which cannot be provided by the NHS and provides charity status to benefit from gift aid, corporate support while also providing donor reassurance.
Tree of Hope Head of Marketing and Family Support Georgina Lowry said: ‘We hope the event goes well and wish Esmé and her family all the best with their fundraising. We are here to support however we can.’
Tickets for the evening cost £20 and are available from Natalie, Liz or Carly on 07584 201623 or on carlykathleen.ck@gmail.com
For more information or to donate to Esmé’s fund, visit https://www.treeofhope.org.uk/esme-ashton/