Being able to have a specialist seat at home would make a big difference to life-limited Ruby Ewings from Devon, allowing her to relax in comfort while having the support she needs for the weak and stiff muscles in both her arms and legs due to Cerebral Palsy.
The four-year-old spent most of her first year of life in hospital after being born at just 29 weeks of pregnancy and having a brain haemorrhage at just three days old, which caused a brain injury and Spastic Quadriplegic Cerebral Palsy. She also has chronic lung disease, for which she needs 24-hour oxygen, is registered deaf and blind and doesn’t speak.
Painful extensions, which are part of Ruby’s Cerebral Palsy, cause her to become distressed and being able to sit comfortably with all the support she needs helps to keep her calm, which reduces the extensions. Although Ruby’s parents Joanne and Ben bought her a second hand specialist seat called a P-Pod – which is essentially a bean bag with a special moulded seat – for her to use at their Cullompton home, this isn’t fitted to her body shape, so isn’t as comfortable as it could be. When she experiences an extension it also takes her legs beyond the range of the seat.
However, as a new P-Pod specifically fitted for Ruby would cost more than £1,000, the family turned to Newlife Foundation for Disabled Children for help. Newlife is the UK’s largest charity provider of specialist equipment for children with disabilities and terminal illness.
Mum Joanne said: “Ruby can’t walk or sit up on her own as she has no trunk support or head control. Life can be very stressful, but it can also be very rewarding. Ruby is sociable and she loves watching other children, especially those who are mobile. She gets a lot of enjoyment out of interacting with other people.
“It’s hard to predict what the future holds; the Cerebral Palsy puts such a strain on Ruby’s body and she gets repeated chest infections, has asthma and chronic lung disease. When she comes home from school it would be nice for her to have somewhere to relax properly. When we trialled the P-Pod she needs, the difference was immediately obvious – she look so much more comfortable!
“As it comes with a tray it means she could play, which would help improve her motor skills and as the P-Pod would put her at the same height as us sitting down, it means she could play with her sister, Lillie, aged five and seven-year-old brother, Harley. Having a P-Pod for Ruby would make family time so much better and life less stressful for us all.”
At Newlife we need donors and fundraisers who want to really make a difference, helping us transform Ruby’s everyday life. To find out how you can support Ruby, go to www.newlifecharity.co.uk/devon read her story and click the ‘Donate Now’ button. Alternatively, contact the Newlife County Liaison Team on 01543 431 444, email [email protected]
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 Ruby will be used to help other local children as he is one of 15 children in Devon with equipment needs of £39,942 currently working with the charity.
Pictured: Ruby Ewings