When your child needs oxygen 24/7, getting out for even the simplest of things like going to the shop for a pint of milk can be an ordeal. So when Belfast parents Judith and James Bleakney were faced with this problem they turned to a leading children’s disability charity for help.
Within days of contacting Newlife Foundation for Disabled Children, the charity had provided a specialist buggy that would accommodate son Jack’s oxygen tank, suctioning machine and other emergency equipment.
Judith said: “Everyday life was becoming more and more difficult. Jack is on oxygen all the time and it is quite difficult to get him out of the house because he has so much equipment that needs to come with him. He had a buggy but this was too small for him so when he had a seizure he was in danger of being injured. He needed specialist equipment with appropriate supports and padding and room for all of his emergency kit.”
Jack – who is almost two years old – has Epilepsy, a visual impairment and Menkes Syndrome, a rare genetic disorder that affects the brain, bones, liver and kidneys. Judith says: “He is stable, but quite sick at the same time.”
Jack, from the Belvoir district of Belfast, had been assessed by local statutory services for a specialist buggy but there was a wait of several months for delivery. So Judith and James gave the Newlife Nurse Helpline – 0800 902 0095 – a call and were directed to the charity’s Just Can’t Wait equipment loan service.
Just Can’t Wait (JCW) is an emergency equipment loan service for families of life-limited children. It aims to deliver specialist wheelchairs, buggies, beds, seating systems and hoists, within 72 hours, direct to families’ homes anywhere in the UK. And like all Newlife support services, it is free of charge. During 2013/14, JCW provision jumped by 88 per cent as more and more families – including those in Northern Ireland – became aware of the service.
In addition to Just Can’t Wait, Newlife provides Equipment Grants for essential disability equipment. Across the UK the figure stands at more than £11million – with £364,515 of this for children in Northern Ireland.
Last year (2013/14), Newlife Equipment Grants went up by 33 per cent.
Jack has benefitted from three Equipment Grants, providing him with specialist PPod comfortable seating for the home, a disability-needs car seat and sensory equipment.
Judith added: “Jack had been in hospital for four weeks and we needed a specialist car seat so he could travel home in safety. Newlife delivered the car seat to the hospital and the PPod to our home, so it was there ready for him.”
Newlife CEO Sheila Brown, OBE, said: “With statutory services across the UK implementing continued budget cuts, we expect to see more and more families turn to Newlife Foundation for help. That’s why we’re appealing for ‘local heroes’ to come forward and donate or fundraise to help a disabled or terminally ill child in their county. Every penny that people donate goes directly to funding vital equipment. This could be a wheelchair or buggy for mobility, a specialist bed or car seat to keep a child safe or a communication aid so they can tell their parents when they are hungry or in pain.”
If would like to help other disabled and terminally ill children in Northern Ireland, call the Newlife Community Fundraising Team on freephone 0800 988 4640 or email [email protected].
To find out more about the range of equipment grant and loan support services offered by the charity, call the Newlife Nurse Helpline on freephone 0800 902 0095 or email [email protected].
Pictured: Jack Bleakney.
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