Imagine your young child waking up at 2.30am every morning – running up and down the stairs, putting themselves at potential risk of injury. The lack of sleep they get results in you constantly fretting and not getting much sleep yourself. This was the reality for the family of five-year-old Riley Pearson from Bognor Regis. Night times were a struggle and the family were only getting limited sleep as a result.     Now, however, with the loan of a specialist bed called a SafeSpace, that’s all changed and the whole family can get a good night’s rest. There is no local statutory funding available for Riley’s equipment so Newlife Foundation for Disabled Children has loaned the family the specialist bed. But now Riley needs a permanent Safety Sleeper of his own and Newlife is appealing to ‘local heroes’ in West Sussex for their help. Riley was diagnosed with a rare condition called Smith-Magenis Syndrome and is one of only 100 people in the UK with this condition and 600 in the world. This has resulted in him having developmental delay, communication difficulties and he displays challenging behaviour. He also has sleep issues and no awareness of danger; he regularly becomes frustrated sometimes taking those frustrations out on those around him and himself – like banging his head on hard surfaces. Dad Michael Pearson said: “Before the loan of the SafeSpace it was horrendous. Riley doesn’t sleep very well at the best of times regularly waking and expecting horsey rides or wanting to play. We used to have a spare mattress in his room where either I or his mum Suzanne would sleep to make sure he was kept safe. Before now, we’ve found him downstairs in the cutlery drawer . . . it was becoming a struggle for the whole family. “The loan of the bed has made our lives 100 per cent better, it’s been wonderful – before the loan Suzanne and I were always on guard. But now Riley will naturally fall asleep as he feels content, sleeping from 6pm to 5am and we believe it is all down to the bed. Our minds are at ease as he is not able to get out of the bed, keeping him safe throughout the night.” The Safety Sleeper Riley needs costs £3,081, and will create a peaceful environment for him to sleep in. Newlife – the largest charity funder of specialist equipment for children with disabilities and terminal illness in the UK – is appealing to local heroes to get involved and help. The loan bed acts as a room within a room, and CCTV means his parents can observe and communicate with him if he is unsettled. Michael added: “We can now put Riley to bed knowing that will be OK. Because we can only have the bed for six months it would be such a shame for his new routine to be ruined, and more importantly his health will once again be at risk. The bed has not only impacted Riley’s life it has made a difference for the whole family and transformed our quality of sleep.” Right now, Riley’s family is just one of eight in the county who need equipment totalling £9,844. That’s why Newlife has a dedicated West Sussex Fund – https://newlifecharity.co.uk/WestSussex which gives local people the opportunity to help local disabled children. Every penny donated or fundraised in West Sussex is guaranteed to support families in the county. To specifically support Riley, go the website and click on the Donate button beside his story. The website includes contact details for the Newlife County Liaison Team – 01543 431 444 or email local@newlifecharity.co.uk – and shows specific ways people can help support children with disability and terminal illness and their families in the county. Pictured: Riley Pearson

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