Nine-year-old Louie Baines from Porthleven in Cornwall is finally sleeping in safety, with the emergency loan of a specialist bed.
Louie, who recently moved to the county with his family from Lancashire, has a rare genetic condition – Cri du Chat Syndrome – which means he has limited mobility but no awareness of danger, sleep apnoea and is fed through a tube in his stomach for between 16 and 20 hours a day, causing reflux. At night he has to be propped up at an angle of 30 degrees to help stop him choking.
For several years the family had struggled to keep Louie safe at night because he would frequently fall over the side of his previous cot-style bed. Dad Wes said: “Louie would pull himself up and then lean over the sides. He often had severe bruising to his face and chest – but luckily he didn’t break any bones.”
He also risked ripping his feeding tube out of his stomach.
When the family contacted Newlife Foundation for Disabled Children the charity recognised the urgency of the situation and delivered an appropriate high-sided and padded specialist bed within days.
Newlife is the UK’s largest charity provider of specialist equipment for children with disabilities and terminal illness.
Wes said: “The loan bed is keeping Louie safe at last. Although he can still pull himself upright in the bed, the sides are too high for him to be able to topple over. It is also really well padded, so he can’t hurt himself when he rolls around the bed at night. And clear panels in the doors mean we can easily keep an eye on him.”
The bed has a profiling feature so it can be tilted to the required 30 degree angle, and its high-low function means it is easier for Wes and his wife Laura to look after Louie.
The bed was provided through Newlife’s Emergency Equipment Loan service for life-limited and terminally ill children and those sleeping in unsafe environments. Newlife aims to get specialist beds, buggies, wheelchairs, seating and portable hoists to families within 72 hours. In addition, the charity offers Equipment Grants to hundreds of families each year and loans out specialist sensory toys through its Play Therapy Pod service.
In Cornwall alone, Newlife has funded £194,956 of equipment for 90 children – and the charity is currently working with a further six families with equipment needs totalling £7,819. To find out more about how Newlife supports families in the county, and how you can help, go to:
www.newlifecharity.co.uk/cornwall. The website includes contact details for the Newlife County Liaison Team – tel no 01543 431 444 or email [email protected]
Newlife guarantees that 100 per cent of monies donated or fundraised in Cornwall will be used to fund equipment for children with disabilities and terminal illness in the county.