Tree of Hope supporting fundraiser for Christchurch girl with rare genetic mutation SCN8A
A FUNDRAISING dinner dance will be held in aid of a three-year-old girl from Christchurch who suffers around 100 seizures per day.
As reported in the A&T in December, little Esmé Ashton started suffering seizures at six months old.
She was later diagnosed with an SCN8A mutation, a rare genetic condition which affects only 850 people worldwide.
Esme’s mum Carly (36) is helping organise a dinner at The Nelson Tavern in Mudeford on 2nd March from 7pm to help fund Esmé’s care.
There will be a hot buffet, live music from The Essential Party Band, plus a raffle and auction - which includes a weekend of carp fishing in France and a stay at Hoburne Caravan Park in Christchurch.
After Esmé’s diagnosis, her family tried her on 15 different epilepsy medications, some of which caused “horrendous” side effects, and none of which controlled the seizures.
Esmé is currently not a candidate for brain surgery and even if she were, 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,” Carly told the A&T last year.
“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 £1,000 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.”
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 for by the NHS.
Tree of Hope’s head of marketing and family support, Georgina Lowry, said: “We hope the dinner event goes well and wish Esmé and her family all the best with their fundraising. We are here to support however we can.”
To purchase tickets, which cost £20 each, call Carly on 07584 201623 or email carlykathleen.ck@gmail.com
For more information or to donate to Esmé’s fund, visit treeofhope.org.uk/esme-ashton
Last year, Revolution Cheerleading Academy (RCA) held a 5K sponsored cheer, running from Bournemouth Pier to Boscombe, to raise funds for Esmé’s care.
