Parents of two disabled children in Belfast are backing a new awareness and fundraising campaign to support families in crisis in Northern Ireland.
The campaign – Lorcan’s Legacy – has been launched by Newry grandmother Lorraine McMahon, whose grandson Lorcan died earlier this year, aged 22 months. He was born with hydrocephalus – a build-up of fluid on the brain – and brain cysts, which caused him to have frequent seizures. Without any appropriate equipment provision from statutory services, Lorraine and her family were forced to nurse Lorcan on the family sofa.
In desperation, she turned to Newlife Foundation for Disabled Children for help – and the charity delivered a specialist bed to the family home three days later. This meant fewer readmissions to hospital for Lorcan – and the family could make the most of his last few precious months.
Lorraine is now leading a campaign to make more families of disabled and terminally ill children in Northern Ireland aware of how Newlife can help – and urging people to fundraise or donate towards the charity’s £100,000 a year commitment to the region.
Now parents in Belfast – who are currently being supported by Newlife – have come forward to tell their stories – and add their voices to Lorraine’s.
Judith Bleakney, from Belvoir in Belfast, said: “Our son Jack, who is two, has a rare genetic disorder. 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.”
One day a regular trip out to the local shop almost ended in disaster as Jack’s pushchair fell over under the weight of his oxygen tank, suctioning machine and other emergency equipment. Only his parents’ quick thinking saved Jack from injury – but they realised they needed a specialist buggy, and fast.
Fortunately they knew who to contact, as Newlife had already provided a specialist car seat so Jack could be discharged from hospital and delivered disability seating to their home ready for his return.
Like Lorcan McMahon, Jack is being helped through Newlife’s Just Can’t Wait emergency equipment loan service which supports families of life-limited and terminally ill children.
To see Judith talking about how the specialist equipment is helping their family either watch the video above or Click Here Mum Emily Gallagher is another parent grateful for Newlife’s support – this time through the charity’s Equipment Grant service. Last year (2013/14) Newlife provided £95,694 of disability equipment for children in Northern Ireland through this service.
Emily’s five-year-old son Oisin has a diagnosis of Autistic Spectrum Disorder with severe learning difficulties and has no awareness of danger.
Newlife recently provided Oisin with a safe sleeping environment after he climbed out of the windows of this Ormeau home and damaged his bedroom by ripping up carpets and floorboards.
The SafeSpace is, in effect, a room within a room which provides a comforting environment while keeping children safe. Emily added: “It is great. The SafeSpace has really helped establish a bedtime routine for Oisin. He still wakes during the night but is very happy to remain in his SafeSpace so John and I can still sleep as we know he can’t come to any harm. It helps us have the energy required to handle each day.”
Newlife needs £100,000 a year so it can continue to help families in Northern Ireland. To donate or fundraise, go to: newlifecharity.co.uk/lorcan or call the Newlife Community Fundraising Team on freephone 0800 988 4640. All the money received will be used to provide specialist equipment for disabled and terminally ill children in Northern Ireland.
For further information about the charity’s range of practical support services, go to: www.newlifecharity.co.uk. All services can be accessed through the Newlife Nurse Helpline – freephone 0800 902 0095.
Pictured: Jack Bleakney
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