A new safe space bed from Variety allows Ben and his family to finally get a good night's sleep

Ben, from Hampshire, is a very lively and sensory-seeking 12-year-old who likes to be busy at all times. He loves music, dancing, clapping and interaction with others. He also enjoys being ‘out and about’, going on train rides, running around watching the trees on windy days, and generally experiencing new things. Ben was born with a brain malformation called polymicrogyria which means the surface of his brain has too many small folds. This condition has caused Ben to have severe learning disabilities, visual impairment, mild ataxia, epilepsy and behavioural problems. He also has severe sleep issues, and hasn't slept well since birth. This has had a significant impact on his family's wellbeing. Thankfully, Variety was able to fund a safe space bed to help Ben relax, calm down, and sleep better - allowing the family to get a much-needed full night's sleep too.

Ben sitting in his 'safe space' bed

Ben has zero danger awareness and moves around a lot in bed, and his family has had to explore different solutions for his sleep issues in line with his changing needs over the years.

When he was approximately two years old, Ben was given a high-sided bed, which initially did a good job of keeping him safe. However, this was short-lived. As soon as Ben could pull himself up to a standing position, he was able to reach over the bars of the bed and bang on the wall at night. Needless to say, neither the family nor the neighbours were very happy!

Following the advice of Ben’s occupational therapist, the family acquired a fully enclosed 'safe space' bed, which would prevent him from reaching any walls. However, Ben is very much a sensory-seeker, and, as an unforeseen problem, this new enclosed bed provided the ideal environment for him to run around and bounce off the walls, fall down and laugh, in an effort to get more sensory stimulation. This behaviour would sometimes go on for hours during the night, causing the whole house to vibrate – and it only increased as Ben got older and bigger. .  

Clearly, a new option was needed. Mum Emma applied to Variety for funding for a new, more compact, low-sensory, multi-functional safe space bed. 

The bed was delivered at about the same time as the start of the first Covid-related lockdown. For the first few nights, Ben was very unsettled in his new bed as he had become so used to the original 'safe space' bed that that he’d had for six or seven years. However, he soon grew accustomed to it. As the bed is too low for him to stand up in, he now quickly settles himself to sleep. He still wakes during the night, but only for short periods of about 10-20 minutes and then he goes back to sleep. He quite often pulls the entrance zipper down when he gets into his bed as if to say: “leave me alone now!”. 

Lockdown was an awful time for the family as Ben's behaviour became very challenging. The one thing the family held onto every day was the fact that Ben would go to bed and fall asleep every night and they could have some respite. He has even had a couple of ‘lie-ins’ – once until 8.30 a.m. Emma tells us that this was previously unheard of.

Emma says: “Thank you so much to Variety and everyone who donates and raises money. Without charities, many disabled children and their families struggle to get the equipment they so desperately need to improve their lives.  The bed your money paid for has had a huge impact on my life; I had forgotten what it was like to get a full night's sleep”.

Ben and his safe space bed