Her three-year-old son Oscar was only sleeping three or four hours a night - leaving the rest of his family utterly exhausted.
The tot, who has the developmental age of a one-year-old, experiences seizures when he is unwell, has limited mobility and no awareness of danger. He would wake up, rip his bed apart, and climb over his child-gate in an attempt to access the rest of the house, so mum Charlotte would go to him as soon as she heard him wake.
All that changed with the emergency loan of a specialist safe sleeping environment, from Newlife Foundation for Disabled Children. Thanks to the safety bed, Oscar is now safely enclosed in soft walls each night, and is sleeping up to 11 hours at a time - meaning his family is able to get the rest they so badly need.
“Oscar can’t get out of bed to carry on playing so he sleeps more now. It’s made a big difference to all our lives,” said Charlotte, of Deepcar, who admits she was stunned by the difference the bed has made.
And they’re not the only local family whose life has been turned around, thanks to Newlife.
Saki Roussos knows exactly what a huge difference the right piece of equipment can make. The 17-year-old, of Barnsley, has a congenital heart and lung condition and, two years ago, he started to lose the ability to walk. Newlife provided an Emergency Equipment Loan of a mobility scooter so he could still get around the hilly area where he lives. When the six-month loan period ended, Newlife gave Saki his own scooter.
Saki’s Mum, Sharon, said: “Now Saki needs wheels wherever he goes – and the mobility scooter has been fabulous. It has meant he can do every day things like come to the supermarket with me and walk our dog Tilly – things that he was missing out on before. And last summer it meant we could go on a family holiday, which was very special.”
Sharon contacted Newlife back in 2015 because her original request to statutory services for an electric wheelchair was declined on the grounds that Saki was not well enough to be in full-time education. His physiotherapist at Bluebell Wood Hospice recommended Newlife the Charity for Disabled Children instead.
Sharon added: “Saki’s condition is deteriorating – we have an ‘end of life care package’ in place. But he wants to stay at home as long as possible. Having a scooter has helped restore a bit of ‘normality’ to his life when he really needed it.”
Newlife is the UK’s leading children’s disability charity, specialising in support to aid children affected by all disabilities and terminal illness. It is also the largest non-statutory provider of specialist equipment. The charity has improved the quality of life for thousands of UK children and their families. According to Newlife research, there are almost a million children in the UK with significant disabilities. It is believed this number is increasing, as childhood deaths decrease due to improved treatment.
To meet current demand, the charity needs over £8,000 a day to provide essential equipment such as wheelchairs, beds, walking frames, seating, safety equipment and communication aids to children nationwide. Newlife does not receive any government funding and is reliant on income from volunteers and supporters all over the UK and regional appeals to carry out its work. Newlife also operates a recycling and retail business, working with around 150 high street retailers and manufacturers, which helps fund its range of equipment services – but with statutory service budgets being increasingly tightened the charity is experiencing more demand on its services than at any time in its 25-year history.
Caroline Artschan, regional fundraising and awareness manager for Newlife, said: “Currently there are 14 local children in urgent need of equipment costing a total of £20,592. Newlife has helped 423 South Yorkshire children over the last 25 years, and more families contact us with applications each day. That is why charity partnerships, with organisations like Barnsley and Rotherham Chamber of Commerce, make such a huge impact on the lives of disabled and terminally ill children in South Yorkshire.
“The Chamber chose Newlife as its ‘Charity of the Year’ – and has already helped nine children in South Yorkshire get vital equipment.”
One of these children is six-year-old Lucas Rodermond, from New Edlington in Doncaster.
Lucas has autistic spectrum disorder, epilepsy and global development delay. Night-times were a nightmare for his family because he would frequently get up and walk around the house, climbing over stair gates and on furniture.
His mum, Kim Rodermond, said: “Lucas’s seizures meant he hurt himself on the side of his bed. He was also getting up about 20 times a night; he has no awareness of danger and that, combined with his seizures and sleepwalking, posed a serious safety risk for him. He likes to be physical so he would also climb on windowsills and wardrobes – but then fall because his balance is poor.”
Lucas’s paediatrician told Kim about specialist safety beds – fully padded and with sides high enough that children can’t climb out – but she was shocked to discover how much they cost.
She said: “Lucas gets a Disability Living Allowance and I thought I could afford to save £10 of this each month to buy the bed he needs. Then I looked up the prices and almost had a heart attack. Lucas would be almost 40 before I could save enough!”
Fortunately for Kim, her son’s school told her about Newlife, which had recently provided a specialist car seat for one of Lucas’s classmates. The bed, which cost £3,283, arrived in February.
Kim said: “I am really pleased with the quick response from Newlife. Getting the new bed has made a huge difference to Lucas’s night-time safety. There were many times when his arms have been blue from bruises after a seizure – that is a thing of the past.”
Chamber chief executive, Andrew Denniff, said: “Newlife has become very engaged with the Chamber and attended many of our events to not only raise funds but to increase its profile within the local business community. I hope Newlife has benefitted immensely from the partnership.”
Caroline added: “Having worked in the charity sector for over 10 years, I am very aware of how difficult it is for families with disabled children. Members of the public are often shocked to find that a family could wait up to two years for a suitable wheelchair for their child, or that many parents are told by local occupational therapists to sleep on a mattress on the floor with a child who has seizures to ensure their safety.
“At Newlife, we provide the equipment, and guarantee that 100 per cent of any donation from a fundraiser goes directly towards purchasing the equipment, with none deducted for administration costs, That really is a breath of fresh air in the charity sector. What’s more, we tell people exactly how their money has been spent. “This often means a letter from the family to say how the equipment has changed the child’s life. And although, we are a national charity, donations in South Yorkshire are restricted to be spent only within that area.
“I am certain that, if the public was more aware of how we really do change local children’s lives, we could secure much more support.”
Visit www.newlifecharity.co.uk for details, or to donate.