Thanks to coverage in the Yorkshire Evening Post (September 18 and 19), one-year-old Raya Grimes from Armley in Leeds will soon be getting the specialist seating she so desperately needs.
Raya experiences around 200 seizures each day and her parents are looking forward to getting a £797 PPod seat where she can sit in safety – rather than having to spend hours lying on cushions on their lounge floor.
Mum Lindsey Schofield said: “It just shows how many thoughtful people there are out there . . . when you think that we are strangers to many of those who have donated. It has made my heart flutter and brought a smile to my face; this piece of equipment will help the whole family.”
Raya 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, has been putting 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.
“Having somewhere that’s both safe and comfortable for Raya will be a huge weight off our shoulders. It won’t just be used for feeding – it will 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 experienced a huge increase in need in Yorkshire, so the charity appealed to the Yorkshire Evening Post for help with fundraising for Raya.
Newlife’s Head of Operations Stephen Morgan said: “We would like to thank the newspaper for highlighting Raya’s situation and thank all those amazing people across the county who read her story and contributed. We have received £1,215, which means not only can we provide the PPod – that will make a huge difference to this little girl’s life – but we will put the remainder of the funding towards a piece of equipment for another child currently waiting for help in West Yorkshire.”
If you would like to help other children in Yorkshire like Raya, call Newlife’s Regional Fundraising and Awareness Manager for the county, Caroline Artschan, on 07534 491 933 or email [email protected] Or contact the Newlife County Liaison Team on 01543 431 444.
To find out more about Newlife’s work in Yorkshire, go to: www.newlifecharity.co.uk/local and click on the map.
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