Ten-year-old Freddie Piper, from Worcester Park in Surrey, has a complex condition that affects his mobility and results in more than 30 seizures each day. He needs a portable hoist to use around his family home – and a leading children’s disability charity is calling on ‘local heroes’ to help make this happen.
The hoist he needs costs £2,315. If you would like to support Freddie in getting his equipment, go to www.newlifecharity.co.uk/surrey and click on the Donate button next to his story.
Freddie has the childhood epilepsy condition Lennox-Gastaut Syndrome combined with developmental delays and cardiac abnormalities. Newlife the Charity for Disabled Children stepped in to support the family last summer when they urgently needed help to transfer Freddie between his bed, specialist seating and bathroom and into his buggy to go outside – and they were waiting for local statutory services to install a ceiling track hoist.
Mum Nadia Piper said: “Through its Emergency Equipment Loan service, Newlife offered us a portable hoist – and it has been invaluable. We only got the ceiling track hoist fitted at the beginning of January this year; however this is in Freddie’s ground floor bedroom and bathroom and we still need hoist equipment to use in our family living area and the garden.”
With the loan period of the portable hoist coming to an end, having equipment of their own would help the family move Freddie if he has a seizure in the living room, support transfers from one piece of seating to another and enable him to enjoy activities with his four-year-old sister in the garden during the summer.
Nadia said: “A portable hoist will give him greater freedom of movement and allow him to have more dignity as he grows up. It would also mean we could entertain the idea of a family holiday together.”
Newlife – the UK’s leading charity provider of specialist equipment for children with disabilities and terminal illness – is currently receiving more Equipment Grant applications for help than at any time in its 25-year history. Which is why public support is needed to support families caring for disabled and terminally ill children in Surrey.
The charity operates its own successful recycling and retail business, working with leading manufacturers and high street retailers, to fund core equipment provision services – but statutory service budget cuts have left families increasingly reliant on charitable support.
With no-where else to turn, over the past five years there has been a 64 per cent increase in applications to Newlife – and we have responded with a 45 per cent jump in spending.
Newlife’s Consultant Nurse Karen Dobson said: “To meet current applications for vital specialist equipment, Newlife needs more than £8,000 a day – every day. With continued budget cuts in the statutory sector and an increasing number of children with disabilities, we are aware that without public support Newlife will not be able to assist all those families who look to us for essential help. While medical expertise continues to save children’s lives, we require help to support families’ daily equipment needs. Families like yours and mine.”
The website www.newlifecharity.co.uk/surrey includes contact details for the Newlife County Liaison Team – tel no 01543 431 444 or email firstname.lastname@example.org – and shows specific ways people can help support children with disability and terminal illness and their families in the county.
Any funds raised above what is needed for Freddie will help pay for equipment for another child in Surrey, where Newlife has already supported 379 children with equipment totalling £398,924 (including a specialist car seat and buggy for Freddie).
Pictured: Freddie Piper