Three-year-old Evie-Mae O’Grady-Askwith, from Sheffield, can travel in safety to her hospital appointments thanks to a national children’s disability charity.
Evie-Mae has a genetic condition – a deletion of part of Chromosome 2 – which results in frequent seizures that sometimes require rescue medication and admission to hospital. She also has a movement disorder, characterised by involuntary and jerky movements; combined with the onset of curvature of the spine, it is vital that Evie-Mae is appropriately seated.
Doctor and hospital appointments are part of everyday life for the family and transport had become increasingly more difficult. Mum Keeley O’Grady said: “Evie-Mae had been using a standard car seat but it wasn’t suitable from the beginning. We need specialist equipment for Evie-Mae so she can travel in comfort and – most importantly – be properly positioned and secure.”
With no statutory funding available for an appropriate car seat, the family were horrified to learn the price of the equipment – £2,486. Keeley said: “I couldn’t believe how much it would be – we knew we wouldn’t be able to afford it ourselves.”
Evie-Mae’s parents turned to leading UK children’s disability charity Newlife Foundation. Keeley added: “Newlife has already provided us with disability seating so Evie-Mae can sit in comfort and relax at home, so we gave the charity’s Nurse Helpline a call.”
Newlife has funded 167 pieces of specialist equipment totalling £188,813 for disabled and terminally ill children in South Yorkshire; the county-wide figure stands at £667,762 for 591 equipment grants (since 2005). Nationally, Newlife has spent £1.6million on car seats.
Keeley said: “It is brilliant and will be a massive boost for Evie-Mae; its turntable base will also make transferring her into and out of the car so much easier for us.”
Whilst Newlife Foundation has been able to secure the equipment for Evie-Mae, the charity is currently working with the families of another 15 children across Yorkshire, with equipment needs totalling £16,765.13 (South – five children, £8,368.70; West – three children, £4,358.93; North – four children, £2,363.50; East – three children, £1,680.00).
Statutory cutbacks have led to a surge in applications to Newlife Foundation for items like wheelchairs and walkers for mobility, beds so children can sleep in safety and communication aids to give them a voice. So the charity is appealing for ‘local heroes’ to come forward to fundraise or donate towards the cost of specialist equipment for children in their own area.
For instance, Newlife supporters can choose to take on a sponsored sporting challenge, host a coffee morning or cake sale, make and sell handcrafted goods, organise a pub quiz or community car wash, hold a sponsored silence or stage an evening of entertainment.
If you would like to help raise money to fund vital equipment for children in your area, the Newlife Community Fundraising Team can be contacted on freephone 0800 988 4640. Any individual or organisation thinking of running a fundraising event is asked to contact the team, who can offer support and guidance.
Pictured: Evie-Mae O’Grady-Askwith.