Five-year-old Paige Garrington has a rare genetic condition called Tuberous Sclerosis which causes tumours; this is combined with severe epilepsy and a brain aneurysm.
She wears a protective helmet during the day to help prevent potentially catastrophic head injuries but can now sleep without this particular piece of equipment thanks to provision of a specialist padded bed.
Paige, from Hanford in Stoke on Trent, is sleeping in a secure environment after months of safety concerns, thanks to Staffordshire-based national charity Newlife Foundation for Disabled Children. Newlife is the UK’s leading charity provider of specialist equipment for children with disabilities and terminal illness.
Paige had previously had seizures and fallen backwards, hitting her head on her old wooden bed frame, resulting in significant swellings. When her epileptic seizures got worse (she was having up to 70 a day), Paige was moved into her parents’ bedroom so they could keep a constant watch over her.
Although the number of seizures has reduced, Paige’s occupational therapist and family support worker from The Donna Louise Children’s Hospice recommended a specialist safety bed.
With no funding available from local statutory services the family turned to Newlife for help. Emergency provision of the appropriate equipment – combined with a video monitor – means Paige has been able to return to her own bedroom and her parents have peace of mind.
Mum Rebecca Aldersea said: “The bed is brilliant – Paige loves sitting in it and having stories read to her. It helps keep her safe from further head injuries and takes a lot of stress off us. She needs to wear her protective helmet during the day, but it is good for her to be able to take it off at night and let her head breathe. “Having the video monitor has also helped – it has night vision so even if we hear her stir or wake up, we can see her clearly.”
While the monitor was provided with a Newlife Equipment Grant, the bed was through an Emergency Equipment Loan (EEL).
This service is for children with unstable, life-threatening or life-limiting illness and to help those who face injury due to the absence of appropriate equipment. EEL aims to deliver and install equipment support within 72 hours.
Newlife has provided £998,169 of equipment for 854 children in Staffordshire. For further information about how Newlife supports families in the county, go to www.newlifecharity.co.uk/staffordshire.
If you think you could fundraise or donate to help a local child, call our County Liaison Team on 01543 431 444 or email local@newlifecharity.co.uk. 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: www.newlifecharity.co.uk
Pictured: Paige and dad Michael with the emergency equipment loan bed.
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