Leamington siblings are making their parents proud by raising money and awareness to help alleviate the effects of a rare condition which their disabled sister has.
Seven-year-old Leamington schoolgirl Eurielle Ally - better known as Belle - was seven months old when she was diagnosed with a the severe case of the rare genetic condition Angelman Syndrome, which means that despite being a happy child she is unable to walk, talk or eat without assistance and suffers from seizures.
At Geiko hairdressing in Leamington on Tuesday Belle’s sister Leila, nine, will have her long hair cut off to raise money for the Angelman Syndrome charity Assert and so she can donate her locks to The Little Princesses Trust, a charity which makes wigs for children which have lost their hair due to illness.
The girls’ mother Helen said: “I’ve been trying to talk her out of it but she is determined to get it done and she’s looking forward to it.
“She saw the whole Jessie J thing a few years ago and although she’s not having it shaved off it will be very short.”
Over the past few weeks Leila, her brother Jake, five, and their friends have been raising funds for Assert by holding a badge and a bracelet sale and running a stall called Bits and Bobs for Belle at a summer fair .
The Milverton Primary School pupils have raised almost £800.
Today (Friday) Leila and her brother Jake, five, will lead an awareness assembly for fellow classmates which is being supported by Ridgeway School, which Belle attends.
Mrs Ally said: “The chances of having Angelman Syndrome are 1 in 30,000 so it is obviously very rare.
“For my children growing up with Belle they want others to understand that some people are different and if they can raise a few pounds for the charity along the way then that’s great.
“We’re hugely proud of them, it’s good for the community and it’s good to see children thinking of others.”
Assert, short for the Angelman Syndrome Support Education and Awareness Trust supports the families and carers of those with the condition, educates people about the syndrome, assists organisations and individuals in carrying out research into the condition and provides a network for parents of children with the condition to keep in touch.
It holds a biennial national conference which takes place at the Hilton Hotel in Coventry this year from August 29 to August 31.
Mrs Alley said: “It allows us to talk to other parents about the things we are dealing with and helps us to keep smiling.”