The mum of a Pocklington eight-year-old with a rare form of epilepsy resistant to medication spends every night in fear her son will be seriously injured.
Kai King has up to 15 seizures a day. He only sleeps for a few hours each night and can’t be left alone, not even for a few minutes – leaving mum, Jade, both petrified and utterly exhausted.
Kai, who also has Autism, severe learning difficulties and kidney problems and is unable to speak, 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 the Charity for Disabled Children who delivered 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. All of this contributes to Jade’s need to watch Kai’s every move.
Mum, 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. Our local authority won’t help us because of bureaucracy and red tape – it is literally a postcode lottery.”
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 today – so we’re appealing to the local community for help.
In addition to Kai, Newlife has 23 other children across Yorkshire and the Humber who are currently waiting for specialist equipment costing £36,167.
Money raised above the amount needed for Kai’s Safespace will be used to help other disabled and terminally ill children in need in Yorkshire and the Humber.