For 18-month-old Gino Londra from Kirkcaldy having a specialist seat at home means he can sit up in comfort, look around and play, instead of having to lie on the floor. However, as he is looked after at his aunt’s house while his mum works, a duplicate seat was needed to keep him safe and supported while he is there – and Newlife the Charity for Disabled Children was able to step in and help.
Gino has a rare chromosome disorder called 1p36 Deletion, typically characterised by a number of health a development issues, which for Gino includes having hearing loss in both ears, so he uses hearing aids, having delayed development and Epilepsy. Although he was having daily seizures, thanks to medication these haven’t occurred since Christmas, so his parents Charlene and Innes are hopeful these are now under control.
Gino’s mum, Charlene, said: “The main issue is he can’t sit up by himself as he has low muscle tone which makes it harder for him to support his own body weight, so he needs lots of extra padding and support to help him do this – which he gets from this specialist seat.
“We have one at home, but he really needs one for when he is at my sister Mary’s house – she’s an angel and looks after Gino three days a week so I can go to work.”
Gino’s specialist seat provides him with all the postural support he needs from his head and neck to his feet, keeping him upright and in just the right position for his health and for him to be more active. As the seat is on wheels it can easily be taken around the house so he’s always included in activities, however it is too bulky to be transported in the family car – so the Londra family turned to Newlife for help. Newlife is the UK’s largest charity provider of specialist equipment for children with disabilities and terminal illness.
Charlene added: “When he is in his seat Gino has all the support he needs so he doesn’t have to concentrate so much on trying to stay upright. He can move his arms around and play, which helps him develop the motor skills he needs and gives him some independence.
“It also gives Gino a different point of view than when he is lying on the floor. In the seat he can look around and see what’s going on and be more involved in what is happening around him. It also means he’s safe when his cousins are playing around him.”
“The seat is great and Gino really enjoys being in it and will stay in it for an hour or so at a time. He can play more and particularly likes silver space blanket material, Christmas beads and decorations and pretty lights. We were able to get the chair quite quickly through Newlife’s Newlifeable service and it was just what we needed.”
Newlife has supported 88 children in Fife with equipment totalling £197,447. 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 Gino’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/fife. 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 five families in Fife, with equipment needs totalling £33,071.
Pictured: Gino Londra