A Brighton six-year-old with Cerebral Palsy needs a special travel bed to help keep her safe at night when she is away from home, so she can enjoy important respite care, visit relatives and take breaks away with her family.
Evie Mae Fleet’s condition means she has limited mobility and co-ordination. She can only take a few steps if she is wearing special ankle splints and has an adult to help steady her, so she uses a special needs pushchair when she’s outside and bunny-hops around the house. She has learning difficulties and can only communicate simple choices using a picture card system, has no sense of safety awareness and needs help with all self-care.
Evie also has significant sleep issues and will wake frequently through the night, so she has a specifically built safe bed at home. This bed has been designed and padded throughout to keep her from coming to any harm at night because she has no awareness of danger. This means that without an equivalent special travel bed to protect her the whole family are unable to stay away overnight anywhere.
Mum Kelly Ridley said: “Evie is a very happy little girl, but she does become very frustrated because of her lack of communication. She also has had long-term sleep problems – so if she is away from home safety at night time is a real issue. If Evie has much needed overnight respite we all have to leave the flat overnight so carers can stay here with her, but as we have a new baby – six month old Zachary – this is difficult now, not to mention expensive.”
Unable to fund the £2,417 travel bed themselves, the family turned to Newlife Foundation for Disabled Children, the UK’s largest charity provider of specialist equipment for children with disabilities and terminal illness for help.
Now with almost £1,400 already raised, including £500 from Evie’s family, there is just £1,020 left to fund – and local heroes are needed to step in to give her the special travel bed which would transform her and her family’s life.
Mum Kelly said: “Having a special travel bed would have a huge impact on our lives. It means Evie could go and stay at respite, so she could get used to this now and then she could go for longer stays as she gets older. It also means we could go and visit family with her safely or go on holiday.”
“When she was little we could just pad out a cot if we went to visit someone, but now it’s much harder. A travel bed means we could live our lives a little more and take her with us. At the moment it’s just too difficult to keep her safe.”
With applications to Newlife up on last year, the charity is increasingly looking to ‘local heroes’ to help fund vital equipment for children with disabilities and terminal illness in their own counties. If you would like to help Evie, visit www.newlifecharity.co.uk/eastsussex, read his story and click the ‘Donate Now’ button. Alternatively, contact the Newlife County Liaison Team on 01543 431 444, email [email protected]
Newlife guarantees that 100 per cent of the money donated to help Evie will be used to fund his special travel bed. Any surplus funding will help provide equipment for other disabled children in the county as Evie is one of three families in East Sussex 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: Evie-Mae Fleet