Six-year-old Amelia Kenealy, from Roath in Cardiff, needs urgent support to keep her safe and help prevent further health problems from developing.
Amelia has a complex condition including Down’s Syndrome, heart and lung disease and hypermobility, which means her joints move far beyond the normal range. She needs specialist seating to use at home to help reduce pain and offset further health issues – as well as keep her safe.
Newlife the Charity for Disabled Children – which is already supporting Amelia through provision of a safety bed – is looking for local heroes who can help. The seating she needs costs £2,114. If you would like to help Amelia, go to www.newlifecharity.co.uk/cardiff and donate to her specific appeal. The website includes details of the Newlife Supporter Relations Team – tel no 01543 462 777 or email firstname.lastname@example.org – and shows specific ways people can help support children with disability and terminal illness in the Cardiff area.
Local statutory services have provided Amelia with special seating – but it is much too big for her. Mum Katherine Kenealy explains: “Postural support is very important for Amelia’s progress. Unfortunately, the chair she currently has is so big that her feet don’t reach the foot rest, but she can lean over the waist strap to reach down and flick it up. She is able to swing her legs from side to side – which isn’t good for her hips – and by using the swinging action she can move the chair across the room, even with the brake on. I am really concerned that it’s only a matter of time before she turns the chair over. She’s going through the equivalent of the ‘terrible twos’ at the moment, so she is into everything!”
Katherine added: “Amelia’s occupational therapists says the equipment we have asked Newlife for ticks all the boxes. The chair, with harness, can easily be adapted to fit her until she is about 12 years old and would give her the level of postural support – and safety – that she urgently needs.”
Newlife is the UK’s largest charity provider of specialist equipment for children with disabilities and terminal illness. Katherine first approached the charity after Amelia – who can’t walk – pulled herself over the side of her cot.
Thanks to Newlife’s Emergency Equipment Loan service, Amelia now has the specialist high-sided bed she needs. Katherine said: “The loan bed is definitely keeping her safe; that, combined with a monitor to check her breathing which was also supplied by Newlife, has taken a huge weight off my shoulders.”
The charity has supported 130 disabled and terminally ill children in Cardiff. The Kenealys are one of a further eight families currently working with the charity to secure equipment totalling £7,900.
Newlife guarantees that 100 per cent of monies donated or fundraised in Cardiff will be used to specifically help children with disabilities and terminal illness in the city. Any funding raised over above what is needed for Amelia’s seating will be used to help other local children.
Pictured: Amelia Kenealy