A simple piece of specialist equipment to use at home will help maintain ten-year-old Grace Hitchens’ health and give her new opportunities to join in activities with her twin sister.
Grace, from the Gilstead area of Bingley, has a neurodegenerative condition called Niemann Pick Type C which has started to affect her mobility. She is no longer able to walk unaided, but can stand, with support. Grace has access to a standing frame at school but her consultant has recommended she has similar equipment at home – for use in the evenings, at weekends and during school holidays – to help maintain the strength in her body, hips, knees and ankles as well as keep the mobility she still has and aid digestion.
Being able to stand will also mean she can take part in more home-based family activities like baking, which is a favourite past-time of Grace’s.
There is no funding available from statutory services for the £2,079 standing frame for Grace, so her family turned to leading UK children’s disability charity Newlife Foundation for help.
Newlife has previously awarded 237 Equipment Grants totalling £322,007 in West Yorkshire. However, with applications to Newlife up 25 per cent on last year, the charity is increasingly looking to ‘local heroes’ to help fund vital equipment for children with disabilities and terminal illness in their own counties.
Last week (February 25), the charity launched its Newlife West Yorkshire Fund, specifically to provide specialist equipment for local children with disabilities like Grace.
Grace’s mum Fiona Dunne said: “Grace loves to be upright – it gives her more access to play with other children including her twin sister Emily. At the moment they can only play together on the floor; having the standing frame would mean they could do many more things, like baking, together.” She added: “The condition is degenerative and it is only in the last year that Grace has found it difficult to walk. This standing frame is very flexible, and as her condition deteriorates further it will continue to support her, reclining as necessary. She would benefit from having her own standing frame for a long time as it would help maintain her health and what mobility she still has.”
Grace’s is one of nine families in West Yorkshire currently working with Newlife Foundation to secure vital specialist equipment to help improve daily life. Further information about the Newlife West Yorkshire Fund – and how to specifically donate or fundraise to support Grace – can be found by going to www.newlifecharity.co.uk/westyorkshire or by emailing [email protected] Telephone donations can be made by calling 01543 462 777.
Pictured: Grace Hitchens