Most teenagers can’t imagine being stuck in one position for several hours or relying on adults for their every move. But for 16-year-old Emilia Taylor from Melbourne in East Riding of Yorkshire this is her reality. In order for Emilia to get the essential care needed to benefit her health in and outside of her home she needs a portable gantry hoist and shower chair.
Newlife the Charity for Disabled Children is appealing to ‘local’ heroes in East Riding of Yorkshire to help get Emilia the equipment she desperately needs so she can do things that many of us for granted – like staying at her grandparents’ home.
Emilia has a condition called Infantile Refsum Disease which is an inherited metabolic disorder. Emilia is deaf-blind, has global developmental delay and a recent growth spurt means that her walking has deteriorated – now she can only walk when supported.
Emilia needs to be lifted for all transfers, however without a portable hoist the 17 carers Emilia has throughout each week are not allowed to do anything more than move her from a standing to seated position. It has been deemed unsafe as the carers could potentially injure themselves and Emilia by manually handling her. The only people that can move her from room to room, take her upstairs or get her into the bath are her parents Helen and Tom Taylor.
Helen said: “We feel like the world is shutting around us because we can’t access anything anymore. The older Emi gets the harder it is. Her health professionals want her to be as mobile as possible but because her carers are unable to assist it all falls on us. Simple things like taking her out in the garden are really difficult. We can’t put her in the shower without both pieces of equipment, we have to transfer her in and out of the bath which puts a strain on our backs.”
With the portable hoist and a shower chair, Emilia would be able to use the shower with less manual handling making it safer for her and her parents. The equipment would enable Emilia to spend time with her grandparents and her carers would be able to assist more with her daily mobility needs taking some of the pressure off her parents.
Without these two vital pieces of equipment the Taylor family have become socially isolated.
“Even getting respite is difficult for us and Emilia. We are unable to go away for a night because the carers can’t transfer her upstairs to her bedroom. Spending a night away from home Emi is also out of the question without both pieces of equipment; so Emi, her brother and sister are missing out on the chance to get a break – something they all really need when life is as hard as it has been,” added Helen.
Emilia is due to have surgery at the beginning of February as she has a dislocated hip. This causes her pain for most of the day – she regularly wakes up and goes to bed crying because of it. She will be unable to weight bear for six weeks – so having the hoist and shower chair will enable her parents and carers to transfer her as safely as possible.
With no statutory funding for the shower chair and mobile hoist, which collectively cost £3,760, Emilia’s family turned to Newlife, the UK’s largest charity provider of specialist equipment for children with disabilities and terminal illness.
Helen added: “This equipment would open up a whole new world for the family. Emilia’s siblings, aged 11 and 13, will be able to do more with us if Emilia has the equipment. Her carers will have the option of taking her on days out or respite care which not only Emilia needs but we do too.
“She’ll be able to do simple things again like playing in the sand pit in the garden or sitting on the grass. If Emilia is being manually handled less the risk of us injuring her and our backs will decrease. Moving a 16-year-old on a daily basis does takes its toll and as she grows the more we struggle to lift her. We really do need the equipment.”
If you would like to support Emilia in getting her equipment, go to: https://newlifecharity.co.uk/East Riding of Yorkshire and click on the Donate button next to her story.
The website 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.
Newlife guarantees that 100 per cent of monies donated or fundraised in East Riding of Yorkshire will be used to specifically help children with disabilities and terminal illness in the county.
Pictured: Emelia Taylor