Noah's story

When little Noah was diagnosed with the rare disease Landau Kleffner syndrome, doctors told his parents Madeka and Ryan, ‘Don’t look it up because it will really scare you’.

The condition, known as LKS, is thought to affect just one child in 300,000 and robs children of the ability to speak and understand language. Sadly, children with LKS can also develop behavioural problems and autism spectrum symptoms.

Previously a happy, healthy baby and toddler, Noah started to experience seizures aged three. After many tests, he was diagnosed with a childhood epilepsy disorder. Then Noah started to stutter and slur his words.

To his family’s distress, within just two weeks, Noah’s ability to talk disappeared altogether. He was able to pick up British Sign Language quickly and music therapy helped him to express himself. But, desperately worried, Madeka and Ryan opted for a private consultation and Noah, who was experiencing up to 40 seizures a day, was diagnosed with LKS.

Noah, who is now 10, takes seven different medicines each day including steroids. Thankfully he no longer has seizures and, following intensive speech and language therapy, he is able to talk again.

“He still has trouble regulating his voice, which can be loud,” Madeka says. “This can be difficult at school. We also notice big extremes of sadness and rage – a known side-effect of the steroids. But we have been lucky really, as Noah has been affected relatively mildly by LKS.”

Funded by Action, Dr Adeline Ngoh is looking into possible genetic causes of LKS to help children like Noah; you can find out more about this vital research here.