Francesco's story

Francesco developed worrying symptoms when he started school and was eventually diagnosed with Landau Kleffner syndrome (LKS). The condition robs children of the ability to speak and understand language and can also include behavioural problems and autism spectrum symptoms.

When Francesco first started school he was happy, contented and already showing a real passion for music. And with a British mum and Italian dad, he was already bilingual. But towards the end of his first term, Francesco became withdrawn. His teacher felt he seemed lost and, at home, parents Mathias and Nicola noticed that Francesco was not talking or making eye contact.

With Francesco’s worrying symptoms developing over just a few short weeks, it was a time of great anguish. Tests all came back normal but, eventually, after Francesco was referred to Great Ormond Street Hospital, Landau Kleffner syndrome was diagnosed. The condition, known as LKS, is thought to affect just one child in 300,000.

Francesco, now five, takes steroids and other medicines twice a week.

Music has remained an important and nourishing part of Francesco’s life, with music therapy having a calming effect. But, sadly, the impact of LKS on Francesco has been profound: he has become much more anxious, and now goes to a school for children who are deaf. Mathias explains:

“Francesco is ‘functionally deaf’ because his brain does not process sounds in the right way. Being able to use and understand sign language offers him another way to communicate.”

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