A brave toddler is fighting a severe form of epilepsy which leaves her suffering up to 200 fits a day.
Little Raya Grimes suffers from a condition called West Syndrome – a severe neurological illness that causes epileptic spasms and leaves her unable to sit, feed or position herself properly.
The tot has low muscle control throughout her body and is unable to support her head, and as a result she is often forced to spend hours lying on cushions on the lounge floor at her home in Leeds, West Yorks.
Raya’s condition means that she is currently fed through a tube in her nose four times a day – for over an hour each time.
However, she is currently on a hospital waiting list for this to be replaced with a feed directly into her stomach.
Mum Lindsey Schofield is appealing for funds to buy her daughter a specialist chair worth £797 to allow her to sit safely and comfortably, without having to lie on the floor.
Lindsey said that although Raya does have a functional chair, she is unable to sit comfortably in it for more than 30 minutes at a time.
She explained: “Raya’s occupational therapist told us about specialist seating called a P Pod, 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.”
The family were unable to afford the specialist chair, so they turned to the Newlife Foundation for Disabled Children.
The charity conducts fundraising campaigns on behalf of sick children who are unable to afford the specialist equipment they need to help manage their illness.
Caroline Artschan, from Newlife is currently helping the family with their appeal.
She 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.”
Anybody who would like to donate have been encouraged to get in touch with Caroline on 07534 491 933 or email cartschan@newlifecharity.co.uk.
