A desperate couple say they have not had a full night’s sleep in six years as they care for their disabled children.
Amanda Crawford and her partner Colin Craig told how two of their kids have rare diseases and the third is showing symptoms.
The couple average between 20 and 28 hours sleep a week – and most of that is snatched naps when Chance, six, Cj, four, and two-year-old Brooke are asleep.
Amanda said: “The sleep deprivation is a killer for us.”
They have been battling since Chance was born – first up all night with him being sick and then, once they finally managed to get him treatment for the rare type IX glycogen storage disease he has, up every two hours to give him specialised feeds.
He needs to be fed every two hours from 5 or 6am to 1am and even a few minutes delay can make him ill.
Cj has a related condition, idiopathic ketotic hypoglycemia, and his sister, although undiagnosed, has similar symptoms.
All three children are now on strict eating regimes to keep them healthy but their feeds do not always coincide so every day Amanda and Colin have to prepare 36 separate meals – not including their own. Chance also has a feeding tube which must be monitored.
Amanda, 32, from Renfrewshire, has had to give up her career as a journalist and Colin, 30. struggles to cope with his job doing high pressure water jetting.
The family have been seeking help to cope with the demanding feeding schedule.
The council have agreed to provide funding for someone to come in for 30 minutes a day to provide the 1am feeds but the couple have been told they need to find the specialist help themselves.
But Amanda said: “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.”
The couple are begging Renfrewshire Council to put proper care in place to allow them to snatch a couple of extra hours sleep.
In tears, Amanda said: “We can’t live like this. This isn’t a life. I am broken, absolutely broken. I don’t want to do this any more.”
Renfrewshire Council said: “We continue to engage with the family on the support they receive.”
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