Revolution Cheerleading Academy to hold fundraising cheer for little Esmé Ashton of Christchurch who was diagnosed with rare SCN8A mutation which causes epilepsy
CHEERLEADERS will put on a show to support a three-year-old girl from Christchurch who suffers around 100 seizures every day.
Little Esmé Ashton started suffering seizures at six months old and was later diagnosed with an SCN8A mutation, a rare genetic condition which affects only 850 people worldwide.
Revolution Cheerleading Academy (RCA) is holding a 5K sponsored cheer, running from Bournemouth Pier at 10am on Friday to Boscombe, to raise funds for Esmé’s care.
Esmé, who lives in Christchurch with her mum Carly (36) and five-year-old brother Arthur, cannot sit up unaided and is registered blind. The family says they have tried 15 different epilepsy medications, some of which caused “horrendous” side effects, and none of which controlled her seizures.
Esmé is currently not a candidate for brain surgery but, even if she was, there is no guarantee of its success. Carly said that following a “lengthy battle” she has managed to secure a cannabis-based medication through the NHS which helps her daughter.
“When she got it, it brought a spark back into her little warrior’s eyes,” Carly told the A&T. “It’s allowed her to reduce other medications that had left her unable to sit up, smile, or even notice the world around her.
“However, as a basic, early generation medication, the benefits were temporary and Esmé’s epilepsy fought back.
“I am now attempting to access the more advanced cannabis medications that work better and last longer.”
Carly added: “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 by the cheerleaders 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 her with healthcare needs that cannot be provided by the NHS.
Tree of Hope’s head of marketing and family support, Georgina Lowry, said: “We hope the cheerleading event goes well and wish Esmé and her family all the best with their fundraising which we are really pleased to support the family with.”
To donate to Esmé’s fund visit treeofhope.org.uk/esme-ashton
For more information about RCA visit revolutioncheerleadingacademy.co.uk