She contacted the paper who put her in touch with Louisa's parents and the KLS Foundation in America. They advised her to see Professor David Nutt at the Chelsea and Westminster Hospital, who confirmed Lily had the condition.
The symptoms match the ones Lily suffered. Sadly there is no cure, although there is some suggestion that some sufferers do grow out of it.
She met with two other British mothers who had children with the rare syndrome and together they set up the website www.kls-support.org.uk to raise awareness.
Ms Clarke said: 'It is only through talking to other parents, I now understand that in an episode Lily feels like she is trapped in a horror film where everything is confusing.
'Her brain cannot process information. When asleep, her dreams are vividly real. When awake she hallucinates and nothing feels real.'
To help Lily cope, they have no visitors during episodes and keep to a quiet and calm routine. Lily also watches a familiar children's film over and over.
Ms Clarke said she now felt more confident how to deal with the condition and was proud of how Lily was coping.
'Lily has learnt regardless of what she has missed out on, she needs to pick herself up and live every moment of her life to the full.'
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