Five-year-old Oliver Kowal from Southampton, who has a rare condition that makes him ‘one in a million’, is now able to join in more family activities around the home – thanks to the provision of specialist seating.
Oliver, who lives with his family in the Shirley area of the city, has Alternating Hemiplegia of Childhood – a neurodevelopmental disorder characterised by repeated episodes of weakness or paralysis. He can’t walk or talk and control of his limbs can vary greatly.
Mum Vickey Lewis said: “Oliver’s is an extremely rare condition which is episodic; he really is one in a million. He uses a wheelchair, but it’s not appropriate for him to be in this all the time; however, he does need specialist support all the time – particularly when he loses all his seating balance and use of his limbs.”
Oliver needed specialist, comfortable seating with a high-low feature so he can sit with the family in the lounge or at the dining table for mealtimes.
With local statutory services unable to assist, Vickey contacted Newlife the Charity for Disabled Children for help. She said: “The chair arrived at an amazingly helpful and useful time earlier this month (February). Oliver had gone into hospital a few days previously to have a gastrostomy fitted, to administer fluids and medication. That left him with an extremely severe episode of his condition, so knowing the chair would be there to support him and allow us to move him around the house was wonderful.”
Newlife is the UK’s largest charity provider of specialist equipment for children with disabilities and terminal illness and has supported 441children in Hampshire with equipment totalling £655,790. It offers a range of services and is now championing a recycling initiative which takes equipment destined for landfill and refurbishes it to meet national standards.
Beds, wheelchairs, standing and walking frames, hoists, buggies, seating and bathroom aids – collected from statutory services and individuals – are available on a first come, first served basis through www.newlifeable.co.uk
Families who would be eligible for a Newlife Equipment Grant – like Oliver’s – can apply for free support through Newlifeable, should the item they need be advertised on the website. However, each item can also be purchased at a substantially reduced price which covers the cost of refurbishment.
This not only enables Newlife to support more disabled children than ever before, it also helps statutory services by saving them storage costs for equipment they can’t allocate locally and at the same time enabling them to meet their legal responsibilities by creating a trusted UK-wide second-hand market.
Newlife Head of Operations Stephen Morgan said: “The number of disabled and terminally ill children in need around the UK is rising – government figures have put this at around one million – but the budgets set for provision through statutory services are declining at local levels. So new and innovative ways must be found to make provision. Newlifeable demonstrates the importance of getting this equipment back into circulation nationally.”
To date, Newlife has recovered over £1.2million of equipment which it has refurbished at a cost of around £210,000.
To find out about the full range of Newlife services, go to: www.newlifecharity.co.uk.
If you would like to find out more about how Newlife supports families in your area, go to: www.newlifecharity.co.uk/hampshire. The website includes contact details for the Newlife County Liaison Team – tel no 01543 431 444 or email [email protected] – and shows specific ways people can help support children with disability and terminal illness and their families in the area. Right now, Newlife is working with a further 19 families in Hampshire, with equipment needs totalling £55,020.
Pictured: Oliver Kowal