Belfast Telegraph

Logan is always smiling... but it's really a symptom of his rare genetic disorder

Logan McKechnie
Logan McKechnie

BY ADRIAN RUTHERFORD

Most parents would be delighted to see their six-year-old son always smiling and laughing.

But for Logan McKechnie's family, his constantly happy nature is a reminder of the difficulties that life holds for him.

Logan, from Ballywalter in Co Down, has Angelman Syndrome, a rare genetic 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.

Now a children's charity has stepped in to provide vital equipment to help make his life a little easier.

Although extremely active and agile – he is able to crawl and can pull himself to stand up – Logan has no sense of danger. He is on multiple medications and has to wear a helmet to protect his head.

Logan, who also suffers from epilepsy and has daily seizures, communicates by using a mixture of basic signs, picture boards and gestures.

He sleeps very little 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 – only to then be told they could not secure funding to meet the £4,750 cost.

So they turned to Newlife Foundation, a national charity which helps disabled and terminally ill children, to help fund the equipment.

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 has pledged to raise the funds for Logan. Last year the charity awarded £1.5m in equipment grants throughout the UK – including over £68,863 in Northern Ireland which helped 42 children.

Newlife chief executive Sheila Brown said public donations can make a huge difference to families' lives.

"Our equipment grants are so vital to so many children, offering practical support to families in need," she said.

"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 we are calling on local heroes to help us raise money to fund equipment in Northern Ireland."

Irish actor Colin Farrell (below left) has campaigned for greater awareness of the syndrome after his son James (10) was diagnosed with it.

The Dubliner initially tried to give his son privacy but later decided to highlight the condition by speaking out about it.

He said watching his son deal with the syndrome has made him a better person.

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