Kuba’s arrival into the world was already difficult; the doctors had to breathe on him, and already, as a 6-week-old baby, he had his first epileptic seizure. This was followed by several weeks of hospitalisation, where he underwent an immense amount of complicated tests. After many more prolonged seizures, at nine months, a genetic test confirmed Dravet syndrome, known as “catastrophic” epilepsy. It is a rare and very severe form of intractable drug-resistant epilepsy, which has other problems and diagnoses associated with it.
Kuba suffers from, among other things, atypical autism, moderate mental retardation with significant behavioural disorders, hyperactivity, coordination and mobility problems. He also has hypotonia, ataxia, hypermobility, kyphosis, cerebellar syndrome, and visual impairment. These together mean that Kuba is immobile and dependent on his mother’s help all day. Unfortunately, seizure triggers can even be joy, excitement, for example, fatigue, a change in environment, but also warm weather or just a sudden temperature change.
So, he must follow a strict regime and be restricted and directed in everything. He cannot run, jump or get too happy or angry; he cannot go out in the summer in high temperatures and the sun, hindering his development. He can’t enjoy himself like other healthy children playing at the playground. He can’t go in the pool, and he can’t get too much joy, for example, even at Christmas when opening presents… all of which can cause him epileptic seizures.
In addition, patients with Dravet syndrome are at extremely high risk of SUDEP, which is sudden and unexpected death in a patient with epilepsy. Therefore, their vital signs must be monitored. Kuba can use NightWatch to monitor epileptic seizures during sleep. With such an assistant, parents can sleep peacefully and without worrying about Kuba’s health, without having to watch him all the time and thus have more energy for the daily demands of caring for him.
