Family holidays and sleepovers with grandparents are normal for many children.
But for nine-year-old Zak Macefield these activities pose a constant safety risk.
Zak, from Sedgley, is one of only 30 people in the UK to be diagnosed with Kabuki syndrome, a rare condition that affects many parts of his body.
It means he cannot walk, talk or stand and is fed by a machine.
Zak needs 24-hour care and sleeps in a specialist bed as he is often sick during the night and rolls which puts him at risk of falling.
In order for mum Kerry to have essential respite, the youngster will sometimes stay overnight with his grandma.
But the standard bed at his grandma’s can’t keep him safe so she has to put a mattress on the floor, surround him with pillows and keep a close eye on him.
However, Zak will soon be able to enjoy more comfortable sleepovers with his grandma as well as a holiday to Norfolk after being given a specialist travel bed worth £2,250.
The bed has been paid for thanks to funding donated to Newlife Foundation for Disabled Children from The Morgan Foundation, the charitable trust founded by Wolverhampton Wanderers Chairman, Steve Morgan. Over £400,000 was raised at the Morgan Foundation bi-annual charitable Golf Day and Gala Dinner held at Carden Park on 16th May and this sum has been restricted to Newlife to purchase equipment for disabled children in the Morgan Foundation remit area.
Mrs Macefield said looking after a child with the condition is a full-time job.
She said: “He basically needs round-the-clock care. He doesn’t sleep very well and is often sick during the night. The specialist bed we have, which was also given to us by Newlife, helps with his posture so he’s not sick as often.
“The travel bed is exactly what we need. It means we have somewhere to keep him safe when he is staying with family. It means he will always rest in a comfortable and safe environment. It even folds up to be really compact so it is easy to put in the car.”
Kabuki syndrome is named after a Japanese traditional theatrical form because the visual symptoms are similar to the actors’ make-up.
It is not yet known what causes it, but a genetic abnormality is suspected by doctors.
The family will receive the travel bed in time for Zak to go on holiday to Norfolk with his parents and sister Courtney in August.
Mrs Macefield said: “We have been away once before and we placed Zak in a standard bed surrounded by pillows but I was constantly worrying throughout the night.
“He came close to falling so we ended up putting him on the floor and that’s not fair. I know I wouldn’t like to sleep like that.
“The new travel bed will allow us to enjoy time together as a family without worry. It will make a huge difference and will also allow Zak to enjoy more sleepovers with his grandma.” Pictured: Zak Macefield
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