Murray is so much more than one in a million

By JEN LAVERY
Published on 17/09/2012 12:00

EVERY parent thinks their child is one in a million – but those odds must seem paltry to the family of three-year-old Murray McKenzie.

Murray is one in 364 million, after being born with a genetic condition so rare it is only shared by six other children in the world.

The youngster has a partially deleted chromosome, something which doctors believe has only been detected in 14 other people worldwide – and as his parents do not themselves carry the micro deletion which leads to the disease his case is even more unusual.

His father Mark, 44, likens the odds to “winning the lottery – and then walking outside and being hit by a falling satellite”.

The condition has led Murray to develop far slower than other children – he cannot communicate and could barely sit up straight until recently – and left his parents struggling to find information about his problem.

Mark told the Evening News: “The first time we knew there was a problem was when he was about six months old – most children are sitting up and exploring by that point and Murray wasn’t doing that.

“He underwent various tests and scans, but it still took until he was two years old before he was diagnosed. My wife and I used to say the worst thing was not knowing, but even now we still don’t have any kind of prognosis, we just need to wait and see how he develops.

“We were given a list of other children who have the condition and there are only about five or six in the world. Most of them live in Australia and New Zealand, so that makes speaking to someone else who has experience of this very difficult.

“However, we have been told that as it relates to the brain, two children could have it and still develop completely differently.”

Murray, described as having “the most amazing smile and the best giggle in the world”, was recently assessed by the British Institute for Brain Injured Children (Bibic) in Somerset, who placed his development at 9-12 months.

Mark, who lives in Prestonpans with wife Laura, 30, and four-week-old daughter Sophie, who does not carry the condition, is running the 10k next month to raise money for the charity.

“Bibic have been fantastic,” he said. “By following their recommended daily programme of exercise and stimulation we have already seen improvements in his awareness and development. He can now sit in a seated position, which he couldn’t do six months ago, but we do have to seat him like that. However, he can stay seated for about five or six minutes.

“Murray also doesn’t have speech or communication skills, but he has now started to acknowledge us more. So we have seen improvement, but there’s no way to ascertain how much more is to come.

“There was an article in the Evening News recently about the Scottish Government campaign, Things to Do Before You’re Three. Murray is three and there’s only a couple of things on that list he can do, like splash in the bath. Everything else is a non-starter.

“That being said, we are grateful for so many things. At least Murray’s condition isn’t life-threatening.

“I recently read about a family who are celebrating Christmas with their child now, because he may not live until then, and it really put things in perspective.”

Mark is taking part in the BUPA Great Edinburgh Run on 7th October and you can sponsor him at http://www.justgiving.com/murray-bibic

[e-mail]