A light that improves the daily life of his son

Early in 2009, Tim Buckinx and his wife were confronted with an abrupt change in their family, specifically in their son’s daily life. Their son was suffering from epileptic seizures every 20 minutes, and at night, these would come with fierce nightmares. The family went into survival mode.

After many hospital stays, their son was finally diagnosed with ring chromosome 20 syndrome (r(20)). R(20) is a rare chromosomal disorder characterised by childhood onset drug-resistant epilepsy with multiple seizure types, typical electroencephalographic findings (EEG), mild to severe intellectual disability and behavioural problems.

Despite different anti-seizure medications, Tim’s son was still suffering from very frequent absence seizures and non-convulsive status epilepticus. People living with the condition experience the seizure as a full black-out, but for outsiders, they look like they are daydreaming, which makes it difficult for parents (and teachers) to report seizure occurrences and frequency to the neurologist.

During his many hospital stays, Tim would stare at the EEG monitor: “I noticed when looking at the EEG monitor that I didn’t need to ask him if he could hear me or not; my untrained eyes could see on the monitor that he was having a seizure.” This got Tim thinking. With solid experience leading international digital teams, Tim had closely followed the evolution of biosensors in consumer products and the opportunities they offer.

It was during a bedtime conversation between father and son that Tim got challenged to create a tool that would help his son explain and thus reduce the impact of his seizures at school. “Papa, you work in digital – can’t you create a light that turns on when my brain switches off because then my teacher will see the seizures and know what to repeat or when to give more time for a test.”

For Tim, this meant diving into EEG technology, reaching out to other parents in the same situation, teachers, experts and specialists, all with the same need: the ability to have real-time data to know when the person is conscious or not. Such a solution would also capture objective information about seizure frequency for improved clinical care.

With this information, parents would know if it has been a good or bad day, but it would also take away reporting pressure, which previously took up much time and worry for parents. “It enables you not having to speak about epilepsy anymore. Before, when we
asked how his day had been at school, he would understand that the real question behind was ‘how many seizures did you have’?”

For Tim, the focus is on digital interventions that act as an assistive solution, minimising the impact of the condition on the daily life of the person and, in the future, providing potential digital therapeutic interventions. “I strongly believe that we need to create more digital products in healthcare that make people with a condition think less of their condition, not more.”

Tim and his son’s story is an example of how the bright idea of a 10-year-old can be turned into a real solution to overcome many different aspects of living with a rare condition, such as the feeling of not fitting in, and to empower people to manage their condition better and have meaningful interactions with those around them, with the support of new technology.

In 2021, Tim was awarded the EURORDIS Black Pearl Award for developing technologies that significantly improved the daily lives of people with rare diseases.