Fabulous local fundraisers have responded to a call to help eight-year-old Bethany Payne from Paignton get the specialist buggy she needs so her family can take her out and about in comfort and safety. The good news has come just in time to add a little Christmas cheer.
Bethany has Mowat-Wilson Syndrome, a rare condition with just over 200 cases reported worldwide. The syndrome causes complex health problems including multiple heart defects and epilepsy. As a result she gets tired easily, especially outside the family home.
Newlife Foundation for Disabled Children already had £1,107 towards a specialist buggy and – through the Herald Express – launched an appeal for ‘local heroes’ who could help us help Bethany. Around a dozen people have come forward, with donations ranging from £5 to over £1,000 to make up the £2,215 outstanding.
Bethany’s mum Kirstin Payne said: “This is wonderful news. The buggy will make a big difference to Bethany and make life so much easier for the whole family.”
Newlife’s Head of Community Fundraising Nora Smith said: “The response to our appeal for help for Bethany has been amazing and we are very grateful to everyone who is supporting her. Newlife guarantees that 100 per cent of all money donated or fundraised in Devon is used specifically to provide specialist equipment for disabled and terminally ill children in the county.”
For further information about how Newlife supports children with disabilities and terminal illness in Devon, go to www.newlifecharity.co.uk/devon. The Newlife County Liaison Team can be contacted on 01543 431 444, email email@example.com.
Kirstin said: “Bethany has a wheelchair with a power pack, but this is very big and heavy which makes it difficult to manoeuvre when we’re out. Crucially, it is an upright chair and when Bethany gets tired she needs to be able to lie back and sleep. Being tired can trigger a seizure and once she has had one she can be unresponsive for hours. All of this means we are limited to trips out of no more than one and a half hours.”
She added: “Bethany needs to use her wheelchair in school but for family life a manual buggy is essential. The wheelchair can only cope with flat, even surfaces – gravel and dirt tracks are impossible and the power pack regularly gives out. This imposes limitations on Bethany’s life.”
With no funding available from local statutory services the family turned for help to Newlife, the largest charity provider of specialist equipment for children with disabilities and terminal illness in the UK. The charity has supported 307 under-19s in Devon with equipment totalling more than £440,000.
Pictured: Bethany Payne