Most mothers would be delighted if their six-year-old son was always smiling and laughing.
But for Logan McKechnie’s mum, Abby James, his constantly happy nature is a reminder of the difficulties life holds for him. Logan, who lives in Ballywalter, County Down, has Angelman Syndrome, a chromosome disorder which causes severe learning difficulties and leaves him unable to speak.
One of the side-effects is that Logan is easily excited and almost permanently laughing or smiling. But the youngster also suffers from epilepsy and has daily seizures. He is extremely active, able to crawl and is very agile, and can pull himself to stand up, but the youngster has no sense of danger and, as well as being on multiple medications, he has to wear a helmet to protect his head.
Logan communicates by using a mixture of basic signs, picture boards and gestures. He gets very little sleep at night, which also has a profound effect on his parents and two-year-old sister Emily.
When his family heard about specialist equipment which would enable Logan to sleep in safety, they were thrilled, but then came the bad news that the local authority wouldn’t fund it. So they turned to Newlife Foundation, a national charity which helps disabled and terminally ill children, to help fund the equipment, which costs over £4,750.
The Safespace – a room within a room – is designed to give children like Logan a safe environment which can help calm him ready for sleep but also provide a safe environment when he wakes during the night.
Logan’s mum, Abby, said: “At the moment Logan is in a pen bed – a sort of pen over a small single bed – but it is very cramped and no longer suitable for him.
“He is physically very mobile, crawling and climbing, and the Safespace will keep him safe at night – he won’t be able to get out and turn on the cooker, or the taps, for instance. Because he has epilepsy there is a danger he may fall and hit his head on a hard surface, so this will mean he is safe, and give us peace of mind.”
Newlife charity has pledged to raise the funds for Logan. Last year the charity awarded £1.5million in equipment grants to children throughout the UK – including over £68,863 in Northern Ireland which helped 42 children. However, Newlife is experiencing a huge increase in demand on its resources; calls to its Nurse Helpline – 0800 902 0095 – have shot up compared to this time last year and there are thousands more hits on the charity’s website www.newlifecharity.co.uk
Newlife CEO Sheila Brown, OBE, said: “Our equipment grants are so vital to so many children, offering practical support to families in need. Equipment can range from a pain-relieving bed to communication aids, and from wheelchairs to standing frames. Equipment that costs from hundreds to several thousands of pounds really can revolutionise a child’s life.
“Because of the huge demand,” said Sheila, “we are calling on ‘local heroes’ to help us raise money to fund equipment in Northern Ireland. Newlife guarantees that 100 per cent of any gift or donation will go directly to local disabled children.”
Newlife is currently working with the families of six children in Northern Ireland who need specialist equipment totalling over £11,860. Newlife is calling on local individuals, groups, companies and organisations to come forward to help. Anyone wanting to support the charity can call the community fundraising team on freephone 0800 988 4640.
One hundred percent of all funds raised will be used to help disabled and terminally ill children in Northern Ireland. Any funds raised over that which is required for Logan will be ring-fenced to help more Northern Ireland children.
Pictured: Logan McKechnie