Three-year-old Alexa Galloway is able to sleep in safety and get out and about in her local community, thanks to provision of specialist equipment by Newlife Foundation for Disabled Children.
Now Alexa’s mum, who lives in Chudleigh, is backing a Devon-wide awareness and fundraising campaign for Newlife – called ‘Sam’s Legacy’* – so more families of disabled and terminally ill children across the county can get the vital equipment support they need.
Alexa has Rett Syndrome, a degenerative neurological condition which has resulted in severe difficulties with mobility and co-ordination and has delayed her development. She is unable to talk and has recently been diagnosed with an 18-degree curvature of the spine.
Mum Juliet said: “It was Alexa’s occupational therapist who told me about Newlife, when local wheelchair services were unable to provide me with the specialist buggy she needed. However, wheelchair services did offer a voucher for £1,324 towards the equipment, leaving me to find the remaining £1,345. That’s where Newlife came in – providing an Equipment Grant so Alexa now has a buggy which can be forward or backward facing, so I can keep a close eye on her when we are out, and offers appropriate postural support, which is particularly important now she has scoliosis.”
Since then, Newlife has also provided a specialist bed (£4,837) to keep Alexa safe at night, through the charity’s Just Can’t Wait emergency equipment loan service.
“The bed has been a godsend,” said Juliet. “Before, she was in a regular cot and often banged her head and body against the rails as she has no awareness of danger; she had bruises everywhere. Now, with the specialist bed, I have peace of mind. It is really well padded so she can’t hurt herself and the base also moves up and down so I can raise it to get to Alexa more easily and put it down so she can’t fall over the side.”
Now Juliet is backing Newlife’s ‘Sam’s Legacy’ campaign – to help more families of disabled and terminally ill children in Devon can get the support they so desperately need.
*Sam’s Legacy has been launched by the Allen family, from Hemyock, in memory of 18-year-old Sam (Allen) who passed away this summer. He battled cancer for four years and in his final months was provided with a mobility scooter through Newlife’s emergency equipment loan service Just Can’t Wait so he could retain his independence as long as possible. To view the family’s story, go to: https://youtu.be/UTIBW_jhj0c
Newlife needs £40,000 a year so it can continue to meet the need of families in Devon – and Juliet is urging people to fundraise or donate. For further information, go to: www.newlifecharity.co.uk/sam or call the Newlife Community Fundraising Team on freephone 0800 988 4640. All the money received for Sam’s Legacy will be used to provide specialist equipment for disabled and terminally ill children in Devon.
Just Can’t Wait is Newlife’s emergency equipment loan service which supports families of terminally ill and life-limited children and aims to get equipment to their homes within 72 hours. Equipment consists of specialist beds and buggies, wheelchairs, seating and portable hoists.
In addition, Newlife offers Equipment Grants for a much wider range of items; in 2013/14, the charity awarded 1,303 of these grants totalling £2,088,105. Other services include Emergency Bed Loans for those sleeping in unsafe environments and to enable children to leave hospital; also Play Therapy Pods, which offer 12-week loans of specialist sensory and developmental toys to children with complex needs.
Pictured: Alexa Galloway.
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