A MUM has told how she sits awake at night fearing her epileptic son could have a seizure and stop breathing - as she calls for more funding to help families whose children have the condition.
Kia Carlton, 30, of York, spoke out today (Tuesday, March 26) - Epilepsy Awareness Day - as she seeks to raise awareness of the illness at an event at Burton Green Primary School.
Her 10-year-old son Taran attends the school, where staff and pupils will be learning about epilepsy through lessons and assemblies.
In 2012 Kia had to deal with the tragic loss of her 11-month-old daughter Telan, who died of sudden infant death syndrome.
Kia now finds it tough to let Taran sleep without watching him in case he has a seizure.
She said: “I find it very difficult to live with his condition after losing my daughter. If he had a seizure and didn’t come out of it I could lose him as well. I find it really hard to live with.
“With my daughter passing away it’s constantly on my mind, it’s very difficult to sleep.
“Me and my mum watch over him when he’s sleeping.”
She added: “There’s no funding out there to fund equipment for children with epilepsy.
“There are charities who raise awareness but there are no charities or organisations that give financial support to families.”
She believes families with children who have epilepsy should be provided with a monitor which can alert them if their child has a seizure. They cost a minimum of about £400, according to Kia.
She said she can’t afford to pay for a monitor herself as she is a single parent and is not able to work as she needs to look after Taran, who after having a seizure, can sometimes take two to three days to recover.
Taran’s condition has worsened since he was diagnosed at the age of four and he currently has seizures every other day.
“The fits leave him feeling groggy the next day,” Kia added. “It is awful to watch your child go through it.”
Today Kia, of Crichton Avenue, Clifton, along with her friend Kelly Richardson, will be raising awareness of epilepsy at Burton Green Primary at the end of the school day.
They will dress in purple and put up banners and balloons at the school, as well as holding games for children to take part in and collect donations.
Children and staff have been invited to get involved and have the option of wearing something purple and making a donation. Funds raised will go to Epilepsy Action.
Ash Atherton, headteacher at the school, said: “There will be a lot of work in school around raising awareness of epilepsy.
“There’s more than one child at the school with epilepsy and there are other children with close relatives who are epileptic.
“I think it is important children and staff at the school have awareness so they are able to support children with epilepsy in any way they can.”
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