For Shelley Mclean, every night is a sleepless one, just to keep her 11-year-old daughter alive.

Missy was born with a rare genetic condition that affects her breathing, digestion and movement.

She spent the first nine months of her life in hospital before coming home with a breathing tube in her throat, a feeding tube in her stomach, and a line into her bowel.

At first, the family had some NHS -funded nighttime care to help keep Missy safe while she slept.

But when her local NHS body decided she no longer met the threshold, that support was taken away.

Image: Missy has a breathing tube in her throat, a feeding tube in her stomach, and a line into her bowel

Now, Missy's mother is responsible for her care.

"I'm her nurse, her physio, her carer," says Shelley. "I don't sleep pro

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