The Courier & Advertiser (Fife Edition)
Mum in bedside vigil for critically ill Blake
The mother of Carnoustie boy Blake McMillan is continuing her bedside vigil for the dangerously ill fiveyear-old.
Blake was born with a rare genetic condition known as MECP2 duplication syndrome, that causes a number of serious and lifethreatening complications.
Blake, who lives with his family in a specially adapted home in Carnoustie, was rushed into hospital over the weekend after his condition deteriorated suddenly.
He was taken in for surgery where doctors found his bowel was dying.
Blake’s mum, Jenny, was told his only slim hope for survival was if surgeons removed his bowel, and formed a stoma to allow waste to be removed from his body.
Although Blake survived the operation, he remains in a critical condition.
Jenny posted on Facebook: “He is not in a good way. His heart rate is 200, his temp over 40 and they are working very hard to keep his blood pressure up.
“He is paralysed, heavily sedated, on life support and lots of painkillers.”
Last year Blake had to undergo emergency surgery after his airway became blocked due to an issue with his feeding tube.
His condition is so rare there are thought to be only 1,000 or so sufferers in the world.
However, Jenny has raised tens of thousands of pounds in the hope of finding a cure for Blake’s debilitating conditions.
He cannot walk, talk or eat and requires constant care.
His struggle, and Jenny’s efforts on his behalf, have earned the family thousands of admirers and well-wishers.
In a second heartbreaking post, Jenny gave a further update on Blake’s condition.
She said: “Just a quick post that I hope lots of you will see. Messages are coming in by the second so just want to let you know there isn’t much news.
“He’s remained much the same overnight. They tried to reduce his blood pressure medication but he didn’t cope too well and it had to be increased again.
“As for me, I’ve had a very fitful night, not much sleep.
“Woke at 3 and after a few seconds, reality hit and I realised it wasn’t just a nightmare but this is really happening.
“I’m still in shock and desperately scared.
“I cannot bear to lose my wee boy, I just can’t. #fightblakefight mummy needs you in her arms again.”
Jenny has been trying to raise £5 million for research into MECP2. People can donate online at www.just giving.com/fundraising/ reversemecp2blake.