Six-year-old Sian is now able to get the essential respite care she needs and go on trips with her family- thanks to her new specialist safe travel bed funded through a charity partnership.
Sian Toole in Liverpool, Merseyside, has Down’s Syndrome, learning difficulties and West Syndrome which is a severe form of epilepsy causing her body to go into infantile spasms. She has no awareness of danger and is unable to walk independently. Sian has a suitable bed at home but does not have one that meets her current medical needs to use outside of the home.
She needed a bed that would provide her with the opportunity to access respite, whilst ensuring all her safety needs are met in any environment.
Mum Kathryn Williams said: “Without a specialist travel bed Sian was unable to get any respite and going away as a family was out of the question because it just wasn’t safe for her.”
The safe travel bed costs £2995, which was beyond the family budget. That’s why Sian’s mum contacted Newlife Foundation for Disabled Children – Newlife is the UK’s largest charity provider of specialist equipment for children with disabilities and terminal illness.
With funding from Newlife’s charity partner The Morgan Foundation, Sian has been provided with a specialist bed allowing her to now get the essential supports she need. This will also create new social and leisure opportunities for the whole family.
Kathryn added: “The new bed is amazing, Sian will be able to get respite and I will no longer have to worry about her because I know she will be kept safe at night. We are planning to go away this year – which would not be possible without the bed, it’s really changed our lives for the better.”
The Morgan Foundation is working with Newlife to ensure more children with disabilities and terminal illness get the right equipment at the right time. This includes wheelchairs, buggies and walkers for mobility, specialist car seats and beds for safety and a range of other disability equipment including communication aids, walking frames, portable hoists and seating systems.
A Morgan Foundation fundraising golf day and gala dinner in support of Newlife held in 2014 raised £450,000 to provide vital specialist equipment specifically for families across North Wales, Merseyside, West Cheshire, North Shropshire and parts of the West Midlands.
Steve Morgan, chairman of The Morgan Foundation, said: “Having a vital aid like this means the health prospects and enjoyment of children like Sian can be improved. Everyone who took part in our golf day or attended the gala dinner has helped – and will continue to help – make a real difference.”
For further information about The Morgan Foundation visit the website, www.morganfoundation.co.uk or call 01829 782800.
If you would like to find out more about Newlife Foundation for Disabled Children and how to access its services, call the Newlife Nurse Helpline on 0800 902 0095 (free from UK mobiles and landlines) or go to www.newlifecharity.co.uk.
Pictured: Sian Toole