Nine-year-old Fredi Lusha, from Windsor, is at risk of suffocating himself every time he goes to bed.
Fredi has severe Autism and ADHD. At night he wraps himself in his duvet and wedges himself between the bed and wall, or sandwiches himself between the bed base and mattress, just to feel the sensory sensation he craves to calm him and make him feel relaxed and safe.
Because he can’t speak, if he gets stuck, distressed or worse, he can’t shout out for help.
His Mum, Holly Knox, said it was like living through a nightmare: “I was petrified that Fredi would suffocate, so much so that I checked on him constantly and was hardly sleeping myself.”
Fredi’s Occupational Therapist told Holly that Windsor and Maidenhead Council wouldn’t fund a specialist bed.
Unable to afford the £4,664 bed herself, Holly turned to Newlife the Charity for Disabled Children, who recognised the risk to Fredi’s life, so rapidly provided him with the high sided, sturdy, specialist bed he needed.
Holly said: “We had got to the point where we just couldn’t carry on. I was desperate.
“Another behaviour driven by Fredi’s condition means he climbs furniture and bounces on his bed. He’s broken more than ten beds this way, four in the last year and I’m so worried that he’s going to seriously injure himself.”
Within days of the £4,644 specialist bed arriving from Newlife Fredi was sleeping much better – as was Holly, because she knew he couldn’t come to any harm during the night.
Holly added: “The specialist bed has made a massive difference to Fredi. He can’t move this mattress and it’s a bed he can’t move or break, so he will be able to use it for years to come. He’s so much happier now.
“For the first time in Fredi’s life I am able to leave him in his room to play, without constantly checking on him and worrying that he’s climbing or bouncing. I know he is safe.”
Stephen Morgan, Newlife’s Head of Charity Operations, said: “Fredi’s need to feel enclosed comes directly from his conditions, but the distinction between behavioural and medical needs is often made when it comes to budgets.
“Every day we hear families which fall through the gaps – But unfortunately disabled children don’t always fall into neat boxes and challenging behaviour and a lack of understanding often prevent children from accessing the equipment they so desperately needed.
“Families of disabled children are left with no alternative but to approach charities like Newlife.”
“With a 15 per cent rise in the number of disabled children in the UK recently revealed it’s no surprise that the number of equipment grant applications to Newlife has doubled in the past five years.”