One-year-old Raya Grimes experiences around 200 seizures each day and her parents urgently need specialist seating for their home so their little girl can sit in safety – rather than having to spend hours lying on cushions on the lounge floor.
Raya, from Armley in Leeds, has West Syndrome which is a severe neurological condition that causes epileptic spasms. As a result, she has low muscle control throughout her body and is unable to support her head. Raya is currently fed through a tube in her nose four times a day – for over an hour each time – and is on a hospital waiting list for this to be replaced with a feed directly into her stomach.
While she does have a functional chair, she can’t tolerate this for more than 30 minutes at a time so her mum, Lindsey Schofield, puts sofa cushions on the floor for Raya to lie on throughout each feed. Lindsey said: “I am on the floor with Raya the whole time, more than four hours a day – I can’t leave her because she could roll off the cushions and get tangled in the feeding tube.
“Raya’s occupational therapist told us about specialist seating called a PPod, which will support her body properly and prevent her from falling. Having somewhere that’s both safe and comfortable for Raya would be a huge weight off our shoulders. It wouldn’t just be used for feeding – it would also give her somewhere supportive to recover from seizures.”
Unfortunately, there is no local statutory funding available for the £797 equipment – so the family turned to Newlife Foundation for Disabled Children which supports dozens of families in Yorkshire each year.
Newlife – the largest charity funder of specialist equipment for children with disabilities and terminal illness in the UK – has responded to the huge increase in need in Yorkshire by appointing a Regional Fundraising and Awareness Manager for the county. Now Caroline Artschan will be focussing her fundraising attention on little Raya to ensure she gets the equipment she so desperately needs.
Caroline, who is passionate about her new role, said: “It is vital we improve standards for local disabled children – and with Yorkshire’s statutory services unable to meet every need in the county, the role of organisations like Newlife Foundation is increasingly important.
“At Newlife, the charity guarantees that 100% of money raised will go directly to supply essential equipment for children with disabilities or a terminal illness. This will hopefully encourage more people to raise money for children in their local area and help to change lives. The Newlife guarantee is possible because the charity operates a successful recycling and retail business which underwrites core costs and services.”
Caroline would like to hear from anyone who thinks they can help. Call her on 07534 491 933 or email [email protected]
To find out more about Newlife’s work in West Yorkshire, go to: www.newlifecharity.co.uk/westyorkshire. If you would like to help Raya, go to this website and click on the ‘Donate Now’ button.
Newlife guarantees that 100 per cent of the money donated to help Raya will be used to fund her PPod. Any surplus funding will help provide equipment for other disabled children in West Yorkshire – Raya is one of 22 children in the area (a total of 53 children county-wide) currently needing specialist support.
For full details of Newlife Foundation’s range of practical support for disabled and terminally ill children and their families, call the Newlife Nurse Helpline – 0800 902 0095 (free from UK landlines and mobiles) – or go to: https://newlifecharity.co.uk
Pictured: Raya Grimes