It is estimated that 1 in around 200,000 people is born with a hypothalamic hamartoma (HH), an epileptogenic lesion attached to the hypothalamus. However, HH syndrome is so rare

Previously Charlie’s paediatricians had diagnosed childhood autism and ADHD. It was only when I read up about odd bursts of laughter and discovered gelastic epilepsy that I was able to insist upon an MRI scan which revealed his hypothalamic hamartoma.