Three-year-old Edie Browne has a complex condition which affects her development and awareness of danger. She urgently needs a specialist sleeping space which she can use to keep her safe during stays in hospital and for respite care.
Now Newlife Foundation for Disabled Children is looking for ‘local heroes’ who can help us make this happen.
We need donors and fundraisers who want to really make a difference. To find out how you can support Edie, go to www.newlifecharity.co.uk/somerset and click on the Donate button with her story. Alternatively, contact the Newlife County Liaison Team on 01543 431 444, email local@newlifecharity.co.uk. While they wait for one of their own, Newlife has provided the family with an emergency loan of a safe sleeping environment.
Edie, from Chew Stoke near Bristol, has a genetic condition combined with heart disease, sight and hearing loss and epilepsy. Mum Sharon Browne said: “Edie used to sleep in a cot but she started climbing out and kept bashing her head. This, combined with her regularly trapping her arms and legs in the bars, was a real problem. But she can’t use a standard bed because she would get out of it and chew unsuitable things in her room.”
She added: “Only a few weeks ago Edie was back in intensive care. The hospital didn’t have any appropriate beds for her so we had to sit up with her all night to make sure that, if she woke up, she couldn’t flop over onto the hard floor.”
The hospital has told Sharon that specialist beds have to be ordered 48 hours before admission, but already twice this year Edie has been admitted as an emergency. “The hospital is relying on us to keep her safe – and we are already exhausted,” she said.
Edie’s parents turned to Newlife Foundation for Disabled Children for help. Newlife is the UK’s largest charity provider of specialist equipment for children with disabilities and terminal illness.
Recognising the urgency of the situation, Newlife has provided a safe sleeping environment on loan for home use, but this is not suitable for transferring into hospital. Now Newlife is calling on ‘local heroes’ to help fund a portable specialist bed.
Newlife guarantees that 100 per cent of monies donated or fundraised in Somerset will be used to specifically help children with disabilities and terminal illness in the county. Any money raised surplus to requirements for Edie will be used to help other local children.
Newlife has already supported 172 children in Somerset, with equipment totalling £231,335 – but right now Edie’s is one of ten families working with the charity with combined equipment needs of £7,124.
Pictured: Edie Browne
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