A campaign has been launched to raise funds to buy a specialist bed for a boy from Pocklington who has a rare form of epilepsy that causes him to have up to 15 seizures a day.
Newlife, the Charity for Disabled Children, is trying to raise £6,600 for a specialist Safespace bed to ease the burden on the boy’s family.
Kai King, 8, also has autism and learning difficulties, sleeping for just a few hours each night. He can’t be left alone, not even for a few minutes, so his mum Jade has to stay with him all night.
Kai has rare form of epilepsy resistant to medication and his mum is on 24-hour call, leaving her exhausted.
He needs to be tube fed and has no understanding of danger. He becomes very distressed following a seizure and impossible to comfort waking his brothers, two-year-old Theodore and nine-year-old Finley.
Shattered Jade is forced to helplessly stand by and watch as Kai won’t tolerate any attempts to touch or calm him.
Kai urgently needs a specialist bed called a Safespace but East Riding of Yorkshire Council, the authority responsible for ensuring Kai has equipment to meet his needs, has refused to fund it.
Desperate for help Jade turned to Newlife, which provided a short-term loan of a specialist bed through its Emergency Loan service to prevent immediate risk of injury.
However, the loan ends in March so the charity is urgently trying to raise £6,600 to provide Kai a Safespace of his own.
Kai’s condition also means he has an overwhelming urge to chew things. He regularly chews the wire to his feeding pump and electricity cables around the house.
He’s also unable to regulate his own body temperature so doesn’t feel when things are too hot, previously burning himself on the radiator without realising.
Jade said: “After a seizure, Kai can be very distressed if anyone gets too close to him – including me.
“It makes it very difficult to comfort him or protect him from hurting himself.
“If he had a Safespace, as well as keeping him safe at night, it would also give him a protective environment to wind down in when he is feeling overloaded.
“The loan bed has been a godsend. I still have to get up to take care of Kai through the night for feeding and when he has a seizure, but I know that he is safe and can’t come to any harm when I go back to bed.
“The idea of what could happen when the loan ends just terrifies me.”
Newlife’s senior manager for care services, Carrick Brown, said: “We would love to be able to help Kai with a permanent safe bed, but we simply don’t have the funds – so we’re appealing to the local community for help.”
Anyone who is able to help Kai should contact Newlife via the website at www.newlife.support/HelpKai, email email@example.com, or call 01543 431444.