Effie Fenton never imagined that moving back to her home town of Edinburgh would mean her disabled daughter Sadie would end up sleeping in an adapted dog pen for her own safety. But, in desperation, she felt that was her only option when Sadie’s specialist bed was recalled by authorities in Northumberland, where she had been living.
Sadie Fenton Hunt, aged ten, has the rare epileptic disorder West’s Syndrome and severe learning disabilities with challenging behaviour. And for the first two months after moving into their Edinburgh home, mum Effie had no other way of keeping Sadie safe.
Effie moved back to Edinburgh with Sadie and her 13-year-old son, but they had to leave the specialist bed – that she had used for eight years – behind in Northumberland and statutory services in Edinburgh could not provide a replacement.
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.”
Effie propped the pen up around an inflatable mattress, attaching it to the walls with clips once Sadie had worked out how to lift it over her head. “It was terrible!” said Effie.
In desperation, Effie contacted leading UK children’s disability charity Newlife Foundation – which provided her with the emergency 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.”
Newlife Foundation Operations Manager Stephen Morgan said: “This is red tape gone mad. It shouldn’t matter where a child lives, we are all part of the UK and we should be making provision for equipment like this on a national basis. ‘Silo’ thinking is having a negative effect on disabled and terminally ill children, forcing parents to make desperate decisions.”
The disability equipment has been provided through Newlife Foundation’s Emergency Bed Loan (EBL) service, and the charity is now working with the family to make permanent provision through an Equipment Grant for £4,259.
Last year (2013/14) Newlife awarded 1,303 Equipment Grants for children throughout the UK, totalling £2,088,105.
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 £5,554. If you think you could help fund permanent bed provision for Sadie, go to https://www.justgiving.com/Sadie-Fenton-Hunt/, call the Newlife Community Fundraising Team on freephone 0800 988 4640 or email firstname.lastname@example.org. Any money raised surplus to requirements for Sadie will be used to fund equipment for other disabled and terminally ill children in Edinburgh.
The charity offers a range of practical support services for families of disabled and terminally ill children, all accessed via the Newlife Nurse Helpline – freephone 0800 902 0095 or email email@example.com.
Pictured: Sadie Fenton Hunt
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