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Couple with disabled children are only having few hours’ sleep

Amanda and Colin with Brooke, Chance and Cj
Amanda and Colin with Brooke, Chance and Cj Image credit: dailyrecord.co.uk

A Scottish couple caring for their disabled children say they have not had a full night’s sleep in six years.

Amanda Crawford and her partner Colin Craig are struggling to bring up their three children, two of which have rare conditions whilst the third is showing signs they may have one too.

Their first child, Chance, now 6, was diagnosed with IX glycogen storage disease, he needs to be fed specific medication every two hours from 5 or 6am to 1am to stop him falling ill.

Four-year-old Cj has idiopathic ketotic hypoglycaemia and his little sister Brooke, 2, is likely to have a similar condition.

The children all have a strict eating programme, but need to be fed at different times which means their parents have to prepare 36 separate meals every day before feeding themselves.

Amanda, 32, from Renfrewshire, was forced to pack in her job as a journalist and Colin, 30, is finding it tough working with high pressure water jetting on 20 – 28 hours’ sleep a week.

Apart from the council providing someone to visit 30 minutes a day to assist with the 1am feeds the couple have been told if they need extra support they must find it themselves.

Crawford told the Daily Record:  “We are in a black hole. We have been strung along for three years.

“We need help now. We do not know where to find someone to do the work. With a good night’s sleep we can do anything but I am struggling mentally.

“We can’t live like this. This isn’t a life. I am broken, absolutely broken. I don’t want to do this anymore.”

A spokesperson for Renfrewshire Council said: “We continue to engage with the family on the support they receive.”