Oxfordshire four-year-old Otis Bennett has an extremely rare chromosomal disorder which means he is unable to talk, walk or stand. Although he sleeps in a special bed at home, without a travel version he is unable to enjoy the simple pleasure of staying at his grandparent’s home with his big brother, or explore new places more than a short car journey away. However, with your help, he could receive the equipment he needs to open up his world.
The special travel bed Otis needs is priced at £3,273, so the Bennett family turned to Newlife Foundation for Disabled Children, the UK’s largest charity provider of specialist equipment for children with disabilities and terminal illness. Now the charity is looking for local heroes to help make this happen.
Otis has a chromosomal condition (known as 3q13.11q13.33), which is so rare his family are still searching for others across the world with the same condition. Although he is able to sit unaided, make noises and crawl around his Chilton home, he needs to use a wheelchair to go outside and has to be hoisted for transfers. Having severe reflux and an unsafe swallow means he needs to be fed through a tube, he has a mild visual impairment, learning difficulties, has no awareness of safety and is being investigated for Epilepsy. Sensory issues, especially to textures, means he can also find the world quite overwhelming, which can lead to ‘meltdowns’.
The special height adjustable, high sided bed Otis has at home keeps him safe through the night, but without a travel version, he and his family – parents Samantha and Stefun and six-year-old brother, Jago – are very restricted.
With a Safety Sleeper Otis would be able to sleep in safety and comfort in any environment. As it folds to a compact size, it can be easily transported in the family car, which means Otis would be able to safely experience so much more in life.
Mum Samantha said: “We were able to use a travel cot for a while, but he has outgrown this and it is no longer safe because it can easily tip over. This travel bed would make such a massive difference to our lives – and it would be lovely to see him in a more grown up bed where there isn’t risk of him falling. The safety sleeper can be used independently or attached to a single bed so he will be safe wherever he goes.
“It opens up at the top, so we would be able to hoist Otis into it and there is even a little hook for his evening feed to hang from.
“Having the travel bed would mean we could take it to hospital, so we would be sure Otis had a suitable place to sleep. He could stay away overnight with his brother at their grandparent’s home, instead of having to come home with us, which is always sad for him. Otis could also begin respite care, which we think would be easier for him to get used to at a younger age, rather than later on.
“We could use the travel bed at home too, as it would be the ideal place for him to go when he has a sensory ‘meltdown’ and needs somewhere safe to calm down.”
If you would like to help Otis, visit www.newlifecharity.co.uk/oxfordshire, read his story and click the ‘Donate Now’ button. Newlife guarantees that 100 per cent of the money donated to help Otis will be used to fund the special travel bed. Any surplus funding will help provide equipment for other disabled children in the county as Otis is one of eight families in Oxfordshire with equipment needs of £8,068 currently working with the charity.
For full details of Newlife Foundation’s range of practical support for disabled and terminally ill children and their families, call the Newlife Nurse Helpline – 0800 902 0095 (free from UK landlines and mobiles) – or go to: https://newlifecharity.co.uk.
Pictured: Otis and his brother Jago
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