Eight-year-old Evie Thompson, who has a rare childhood disease, will soon be getting a specialist standing frame to help manage her condition.

The equipment is being provided by Newlife Foundation for Disabled Children, with funding support from fabulous fundraisers at Central England Co-operative.

Evie, from Bournville in Birmingham, has a rare metabolic, regressive, life limiting condition – Peroxisome Biogenesis Disorder. Hearing, vision and low muscle tone are a few of the issues that affect children with this condition.

Mum Michelle Thompson said: “Evie uses a standing frame at school and I feel it is really important that she is able to continue with this at home at weekends and during holidays.

“Evie has a life-limiting, regressive condition which has noticeably worsened in the last eight months. She has always had good sitting balance and, with support, she has been able to walk short distances, so she could enjoy activities like going to the park. In the last few months, Evie’s gross motor skills have regressed considerably – she no longer walks with straight legs – her knees are very flexed and she can walk for only five to eight minutes. She also drags her legs as she walks. So very sad to see. This is just the beginning of this very cruel condition.

“I like to keep her as mobile as possible and her physiotherapist has suggested her muscles aren’t being properly stretched now. Access to a standing frame every day will help with this.”

Not only will the standing frame help her leg muscles, it will improve her head control as well as aid bone density and digestion.

Michelle added: “Sitting down all the time isn’t good for a lot of bodily functions so a standing frame of her own will be a fantastically useful piece of kit.”

With no funding available from local statutory services for the £1,384 standing frame, the family turned to Newlife Foundation, which is the UK’s largest charity provider of specialist equipment for children with disabilities and terminal illness.

In May 2012 Central England Co-operative colleagues chose Newlife Foundation as their staff-elected charity. Since then they have worked tirelessly to help fund a wide variety of specialist equipment for children in their trading area. So far, more than £1million has been raised and in excess of 460 children supported through this successful partnership.
Jerry Bullen, Manager of the Central England Co-operative convenience store in Pershore Road, Kings Norton, said: “As a regional retailer we always ensure that our staff-elected charity supports people in need in our trading area. We are delighted to have been able to help Evie and her family in this way.”

Newlife CEO Sheila Brown, OBE, added: “This has been an amazing partnership, helping us to support so many in urgent need. Without this level of support from Central England Co-operative, some of these children would have gone without the equipment they needed and many more would have had to wait months or even years just for an assessment of their needs. With statutory services’ budgets increasingly stretched, it is charities such as Newlife which step in to offer the vital equipment that really does change lives.”

For more information about how Newlife supports families in the county, go to www.newlifecharity.co.uk/westmidlands

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: www.newlifecharity.co.uk

Pictured: Evie Thompson

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