Scots toddler with rare 'party baby' condition stays awake for days

dailyrecord.co.uk:

A Scots toddler has been diagnosed with an ultra-rare condition where the tiny patients are known as "party children" because they can stay awake for days.Little Grace-Louise was just seven months old when she suffered her first seizure.She was rushed to hospital and after weeks of tests the family were told she had CDKL5 deficiency disorder (CDD), an extremely rare condition which usually starts with early onset epilepsy.The devastating condition - which affects just 1 in 60,000 children around the world - prevents the development of the brain.

It is unlikely Grace-Louise will ever be able to walk, talk or use her hands.Children with the condition often suffer from sleep disturbances and are known as "party children" because they can stay awake for days.

Grace-Louise Darroch, now three, can stay awake across five or six days with only a few hours of sleep.Parents Leanne, 35, and Alex, 42, said they were devastated when doctors uncovered the condition.Leanne, from Houston, Renfrewshire, said: "The doctors told us Grace-Louise had a very significant gene mutation and my heart just sank."She was behaving like a 'normal' baby, with the exception of the seizures and some digestive issues.

When we left the room I felt broken. I was sure they had to be wrong."The doctors said it was unlikely that she would be able to walk, talk or use her hands.