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Shocking new report shows how disabled children and families like mine became the forgotten victims of the pandemic

16 14 7

For the parents of newborns, it’s a key moment when they can finally dispense with the baby monitor that buzzes away next to their ear, as they struggle for some shut-eye while still listening for signs of unrest from their sleeping tot.

Imagine what it must be like if that time never arrives. Because, for parents like me of disabled children with respiratory issues, lying awake at night listening to the sneezes, coughs and splutters coming from their bedroom is an insurmountable barrier to a decent night’s sleep. And I’ve now had almost 20 years of it.

Audio or video monitors don’t help. They just sit there accusingly on a bedside table, occasionally beeping or flashing while, even asleep, you are on high alert anyway. The moment something sounds not quite right, you’re out of bed like Usain Bolt out of the blocks to check that everything’s okay.

It can be exhausting. Recently, we had a night where my 19-year-old daughter Elvi began snuffling away in the wee hours. It turned into coughing, then choking and, as I dashed downstairs to help her, she vomited all over her bed and me. While I cleaned her up and finally got her back to........

© RT.com

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