Four-year-old Charly-Taylor Leary from Cumnock in East Ayrshire is one of just two children in Scotland (and one of 13 in the whole of the UK) with his neurological condition.
Mum Laura Whitelaw said: “We were told he wouldn’t walk before he was five – but he is really trying, toddling about the house. He is a wee fighter.”
Charly has low muscle tone and requires support throughout the day, using a wheelchair. He also has epilepsy and developmental delay.
When he is at home and out of his wheelchair, the only supportive seating the family has for Charly is a functional wooden chair. Laura said: “Unfortunately, he hates it – he screams whenever we put him in it and he slumps to one side – so he only uses it at mealtimes.”
Needing a comfortable alternative to keep Charly safe at home, the family turned to Newlife Foundation for Disabled Children. Newlife is the UK’s largest charity funder of specialist equipment for children with disabilities and terminal illness.
Newlife is now looking to provide Charly with a specialist PPod seat, which he has been able to trial. Laura said: “The chair was brilliant. His dad and I couldn’t believe it – he was smiling and brushing his hands over the material. But not only is the PPod comfy for Charly, I won’t have to worry about him slumping to one side and falling out of it because it is designed to keep him safe.”
With applications for funding increasingly significantly, Newlife is calling on the support of ‘local heroes’ to help raise the £892 needed to provide the specialist chair for Charly.
To find out more about Newlife’s work in East Ayrshire, go to: www.newlifecharity.co.uk/eastayrshire. If you would like to help Charly, go to the website and click on the Donate button beside his story. The website includes contact details for the Newlife County Liaison Team – tel no 01543 431 444 or email [email protected] – 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 the money donated to the Newlife East Ayrshire Fund will be used to provide equipment for children with disabilities and terminal illness in the area. Any money surplus to requirements for Charly will be used to fund equipment for other children in East Ayrshire.
Newlife has already provided £21,238 of specialist equipment for 14 children in East Ayrshire.
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: Charly-Taylor Leary