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Video: an introduction to Demelza

If you have never tried finding a baby-sitter for a child with epilepsy, or changing facilities for a seven-year-old who still wears nappies, you may have little idea of the difficulties of caring for a disabled child.

For 36-year-old Ashford woman Debbie Southern, even getting a good night's sleep is 'bliss', as her seven-year-old daughter Molly rarely sleeps for over three hours. The youngster, who suffers from a lack of melatonin, enjoys respite stays at Demelza, Hospice Care for Children, giving her mum and dad John a break.

The Sittingbourne-based charity provides respite and end of life care for disabled children, allowing them and their families a few days to feel normal.

Over the next week, KentOnline is taking a look behind the scenes at this extraordinary charity, to mark Children's Hospice Week.