When little Evelyn Nolan was ready to be discharged after nine months in hospital, her parents Elliot and Debbie were told they would need a specialist bed – costing £3,500 – to help care for her.
Fortunately for them, Evelyn’s occupational therapist knew of an organisation that could help – and just a few days after contacting Newlife Foundation for Disabled Children the equipment was delivered and installed in their Southampton home.
Evelyn, who will be three on Christmas Eve, has a chromosome duplication which has resulted in an undiagnosed epileptic condition; she is receiving palliative care.
Elliot said: “We have had a really bumpy year so far and no-one knows what the future holds for Evelyn. But since we received the specialist bed in July she hasn’t had to go back into hospital for overnight care, although she has received rescue medication at home.”
As well as the rescue meds, Evelyn needs oxygen and is hooked up to a monitor at night. Elliot said: “Having a specialist bed – which is what she used in hospital – makes all of this so much easier. Its profiling feature also means we can get to her at a manageable height for the therapy she needs and her head can be safely raised to reduce the risk of choking if she vomits in her sleep.
“Having the bed has been a major thing for us; it means we can care for Evelyn at home, which is much better for her and for the rest of the family. Her brother Fergus has really benefitted.”
The bed was provided through Newlife Foundation’s Just Can’t Wait emergency equipment loan service which aims to deliver, within 72 hours, practical support to the homes of families caring for life-limited children like Evelyn. Other equipment in this service includes specialist buggies and seating, wheelchairs and portable hoists.
In the last financial year (2013/14), the number of Just Can’t Wait loans increased by 88 per cent, as more families in crisis turned to Newlife Foundation for help. All JCW loans are for six months, while Newlife works with statutory services to secure provision; if this is not possible the charity will continue provision through its Equipment Grant service (2013/14 – £2,088,105 UK-wide, up 33 per cent on the previous year).
As demand on all Newlife services continues to grow, the charity is increasingly looking to ‘local heroes’ to come forward and donate or fundraise to specifically help disabled and terminally ill children in their own counties. The charity guarantees that 100 per cent of all monies donated or fundraised will be spent on specialist equipment; nothing is deducted for administration.
Newlife is currently working with the families of six disabled and terminally ill children in Hampshire, with equipment needs totalling £5,312. If you would like to help them get the vital equipment they need, contact the Newlife Community Fundraising Team on freephone 0800 988 4640. Any individual or organisation thinking of running a fundraising event is asked to contact the team, who can offer support and guidance.
To contact the Newlife Nurse Helpline, call freephone 0800 902 0095 or email nurses@newlifecharity.co.uk The Helpline is open Mondays to Fridays 9.30am to 5pm and until 7pm on Wednesdays. There is also an instant messenger-style online Live Nurse Chat service available 24 hours a day and the charity’s website – www.newlifecharity.co.uk – offers an instant translation service in 65 languages.
Pictured: Evelyn Nolan
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