PUPILS are uniting to help a boy suffering from a rare type of epilepsy raise awareness of his condition.
Harley Rigler, four, was born with Dravet Syndrome which causes him to have seizures. At one stage, he suffered almost 160 in a month.
That number has been reduced to 40 thanks to a change in diet and medication but Harley, of Oscroft, still needs to wear a protective helmet and special shoes to aid walking as his development and speech has been delayed.
But despite his disorder, Harley was able to join Kelsall Primary School last September and tomorrow fellow pupils and teachers celebrate Purple Day, designed to raise funds and awareness within the school and the local community about his condition.
Mum Dawn Paterson, who organised tomorrow’s event, said he has made many friends at Kelsall.
“It has been amazing,” she said.
“They all mother him and look after him.
“They often want to ask questions about why he needs to wear a helmet but it still fills me with emotion when I see them helping him.
“I have always strived for Harley to be included.
But we are looking at the issue of inclusion with him being in mainstream education as his tuition often leads to him being isolated from the class.”
At Kelsall, Harley receives one-to-one tuition and regular meetings are held to track his progress within mainstream education. His six-year-old sister Hannah, who does not suffer from the condition, also attends the school.
Purple Day will see cakes and refreshments on offer while specialist epilepsy nurse Paul Langridge, from the Countess of Chester Hospital, will give a special awareness assembly to the entire school, staff and parents.
Kelsall headteacher Steve Williams said: “Harley is a grand little lad. He has one-to-one to enable him to access his learning. Purple Day is about raising the profile of Dravet Syndrome and we are supporting his parents.
“We try to embrace our families as for a child to succeed it’s about working with the families and not just that child.”
Last year, with the help of other parents of children affected by Dravet Syndrome, Dawn formed the UK branch of IDEA League – an international partnership which raises funds and awareness of the neurological disorder.
The charity has so far registered 60 families and aims to raise money to buy life-saving technology. Dawn revealed that although only one in 40,000 children suffer from the disorder, many children are misdiagnosed.
She added: “It is my mission to do everything in our power to help the many families struggling like us to make sure professionals are given the awareness so that early diagnosis can be made.”