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You and your husband founded a non-profit organization after your daughter Elen was diagnosed with epilepsy. She is now a preschooler. How is she doing currently?

I would say that, given the circumstances, she is doing well. Elenka attends a special kindergarten but only for two hours a day. The illness itself, as well as the medication, tires her out a lot, so she needs to nap during the day. Considering the hardships she goes through, she is a positive, cheerful, and brave little girl. She is developing more slowly, so she will attend the special kindergarten for another year, and then we will probably look for a school for children with special needs.

What inspired you to start a non-profit organization to help families with children with epilepsy?

Once we got over the initial shock of the diagnosis, we started looking for a support group for parents of children with the same illness, but we found that there wasn't one in our area. There was an organization called Epirodina, but as the children of those parents grew up, their activities dwindled. On the recommendation of our neurologist, we went to an event called Epilepsy Camp with Epirodina. It was very inspiring and refreshing for us. I often say that when a child in the family is sick, the whole family is essentially sick. We have an older son who is healthy, but we can't do many things with him; we can't go on regular vacations like other families. For us, it's challenging to travel outside the country because the journey would be difficult for our daughter, and I can't imagine her having a seizure in an unfamiliar place and needing to go to the hospital. But when we go together with other families with children with the same illness, it’s a big relief because we don't have to worry about prejudice. We don't have to worry about how people will react if our child has a seizure or judge their behavior. It's also about mutual understanding, support, and sharing experiences. After attending the Epilepsy Camp, my husband and I decided to continue the efforts of the existing non-profit organization and take on the responsibility of organizing the camp.

So EPICANA was established. What other events do you organize?

One of our activities is organizing the Epilepsy Camp, which we have been doing since 2022. We go to Soběšice near Sušice, where the hotel is adapted to the needs of disabled children. It has an elevator, barrier-free rooms, and we also like to use the pool. We have also come up with other events, such as the so-called Epilepsy Ski Camp. This is beneficial not only for children with epilepsy but also for their healthy siblings and parents. Not every child with epilepsy can stand on skis, but here they had the opportunity to try it in a safe environment. We had instructors, one of whom is even a trained rescuer. With their help, two older boys with the illness tried skiing, and less mobile children could go down the hill on a monoski, which compensates for physical disabilities. These kinds of events are very energizing for me. It's nice to see families enjoying things they would normally be afraid to do on their own and that the healthy siblings and parents, whose activities are often sidelined in families with a disabled child, can also participate.

What else can help children with Dravet syndrome and their families?

One big topic we are currently addressing is monitoring children during sleep. A seizure can happen at night, and even if you sleep next to the child, it might not wake you up. However, you need to sleep peacefully and without fear. You need to recharge because caring for a sick child is obviously very demanding. There is a relatively new device on the market from the Netherlands, but it costs almost fifty thousand crowns. We are now helping families to obtain this device, advising them on how to apply for support from various foundations or fundraisers, and handling the purchase from the Netherlands.

Besides sharing your experiences with other families, do you also want to raise awareness about Dravet syndrome among the public?

In 2023, we held the first EpicanaFest in Prague at Gutovka, and we would like to repeat this event every year, always on June 23, the International Dravet Syndrome Awareness Day. Because there are only about a hundred children with Dravet syndrome in the Czech Republic, people know very little about this illness, even those who suffer from other forms of epilepsy. The event included programs for both children and adults, and the proceeds from the voluntary entrance fee were used for our Epilepsy Camp and other activities of the non-profit organization. Paramedics demonstrated how to provide first aid during an epileptic seizure. Doctors from Motol University Hospital spoke about treatment options and the causes of the illness. We even managed to record a short greeting from pediatric neurologist Charlotte Dravet, who described the syndrome in the 1970s. Her message is a great support for the families of young Dravet patients, as we call them. Another successful event, which I hope will be repeated in the coming years, was a charity concert in Příchovice in southern Plzeň.

What did studying at the University of West Bohemia give you, and how do you remember it?

I studied at what was then the Faculty of Humanities (now the Faculty of Philosophy), and in hindsight, I remember it as a carefree time. Maybe I didn’t enjoy the freedom as much because I didn’t live in a dormitory but with my parents and commuted to Plzeň. I have very fond memories of Erasmus, the exchange program in Denmark, and I would recommend everyone to go somewhere during their studies. I was also able to travel around Europe thanks to the organization AEGEE, where students participate in organizing so-called Summer Universities.

The complete interview with Lucie Miczová can be found HERE.