Effie Fenton
Sadie Fenton Hunt needs a special bed!
Fundraising for Newlife the Charity for Disabled Children
Story
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*PLEASE SEE UPDATE BELOW - EXCITING NEWS!!*
RAPID RESPONSE KEEPS SADIE SAFE
An emergency bed loan by a leading children’s disability charity means ten-year-old Sadie Fenton Hunt, from Edinburgh, is no longer sleeping in an adapted dog pen for her own safety.
Sadie has the rare epileptic disorder West Syndrome and severe learning disabilities with challenging behaviour. For the first two months after moving into their Edinburgh home, mum Effie Fenton had no other way of keeping Sadie safe.
Effie moved back to her home city of Edinburgh with Sadie and her 13-year-old son from Northumberland, where her daughter was previously provided with a specialist bed. However, they weren’t allowed to bring the bed with them and Effie was unable to secure similar equipment through statutory services in Edinburgh.
Effie said: “Sadie just doesn’t sleep well – she can stay awake during the night for up to five hours at a time. She is continuously on the go and has no awareness of danger; she is at risk of hurting herself – she bangs her head against surfaces – so she can’t ‘sleep’ in a standard bed.
“You’d think that being on the go all day she would be tired at night. I am. But she just keeps going. Not having a specialist bed for her to sleep in was pretty exhausting – and the adapted dog pen was a last resort to keep her safe.”
In desperation, Effie contacted Newlife Foundation for Disabled Children which has provided her with the loan of a specialist bed which meets Sadie’s needs.
Effie said: “Parents will know what it’s like having a little baby and not getting much sleep. Now think of that going on forever, and the impact it has on a family. Sleep is key to managing the rest of the day so, for us, having a secure bed is essential.”
She added: “Sadie is still awake a lot during the night – that’s just the way her brain works – but she is comfortable and safe in the new bed and she doesn’t get so upset. It is a good solution for the whole family.”
The disability equipment has been provided through the charity’s Emergency Bed Loan (EBL) service, and Newlife Foundation is now working with the family to make permanent provision through an Equipment Grant for £4,751.
Newlife Equipment Loan Service Manager Carrick Brown said: “EBL is a quick-response service designed to help children with life-threatening conditions, for instance those who may experience multiple seizures or who need resuscitation, or who are sleeping in unsafe environments like Sadie.
“With statutory services across the UK implementing continued budget cuts, we expect to see more and more families turn to Newlife Foundation for help. That’s why we’re appealing for ‘local heroes’ to come forward and donate or fundraise to help a disabled or terminally ill child in their area.”
Newlife is currently working with two families, including Sadie’s, in Edinburgh, with combined equipment needs totalling £6,769. If you think you could help fund permanent bed provision for Sadie, donate here, or call the Newlife Community Fundraising Team on freephone 0800 988 4640 or email fundraise@newlifecharity.co.uk
Any money raised surplus to requirements for Sadie will be used to fund equipment for other disabled and terminally ill children in Edinburgh.
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Sadie and her family thank you for your help!