Eight-year-old Bethany Payne from Paignton has Mowat-Wilson Syndrome, which is 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 and urgently needs a specialist buggy so her family can get her out and about in comfort and safety.
Newlife Foundation for Disabled Children is looking for ‘local heroes’ who can help us make this happen. We already have £1,107 towards this vital piece of equipment, which costs £3,322. But we still require £2,215.
We need donors and fundraisers who want to really make a difference, helping us transform Bethany’s everyday life. To find out how you can support her, go to www.newlifecharity.co.uk/devon and click on the Donate button next to her story. Alternatively, contact the Newlife County Liaison Team on 01543 431 444, email local@newlifecharity.co.uk.
Mum Kirstin Payne says: “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, especially if we need to go shopping. 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.”
Kirstin 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.”
Bethany is also registered blind, has thyroid and kidney problems and is fed through a tube in her stomach.
With no funding available from local statutory services, the family turned to Newlife Foundation for Disabled children for help. The largest charity provider of specialist equipment for children with disabilities and terminal illness in the UK, Newlife has already supported 297 under-19s in Devon with equipment totalling £436,577. Newlife guarantees that 100 per cent of monies donated or fundraised in Devon will be used to specifically help children with disabilities and terminal illness in the county. Any money raised surplus to requirements for Bethany will be used to help other local children.
Pictured: Bethany Payne
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