My name is Lucie, I am the mother of an almost 5-year-old daughter Elen, who suffers from Dravet syndrome. We live with our family in Prague, Czech Republic.
When Elen came into the world, at first glance she was a healthy baby. However, in her fifth month, she suffered a long epileptic seizure lasting more than 40 minutes. After several more seizures and hospitalisations, genetic tests revealed that she suffered from a rare and severe form of genetic epilepsy - Dravet syndrome, also called Severe Myoclonic Epilepsy of Infancy (SMEI). Although the disease is genetic, she did not inherit it from either parent; it was just a "gene error" early in pregnancy. Dravet syndrome is also accompanied by many other associated diagnoses, such as delayed psychomotor development, hypotonia, attention deficit disorder, unsteady gait, etc. Although Elen looks like a healthy four-year-old girl, she has many limitations in her life. For instance, she has to follow a strict and regular regime, she has to be constantly under control, she cannot stay with the children in the playground, she cannot have too much fun and she cannot go outside in summer when it is hot outside. All this can lead to an epileptic seizure with unconsciousness, which can further delay her development.
Unfortunately, despite all precautions and four different anti-epileptic drugs, Elen has a large epileptic seizure (Grand Mal) every week. She also may have seizures during sleep, so that is why we are glad we are now using NightWatch.
All these conditions affect the life of our whole family, who have to adapt our lives to Elen's needs. Elen cannot attend kindergarten because she tires easily and often sleeps during the day. Despite all the complications, Elen is a very bright and clever four-year-old girl who energises the whole family with her enormous strength. As her parents, we are happy that she has shown us a new path.
At the same time, I run the non-profit organisation Epicana: https://www.facebook.com/epicanacz. Together with my husband and other parents of sick children, we founded the non-profit patient organisation Epicana with the aim of helping children with epilepsy, in particular Dravet syndrome, and their families in the Czech Republic. For example, we organise a special summer camp for families with sick children.
The non-profit organisation EPICANA z.ú. aims to help children and adults with a neurological disease such as epilepsy and to organise cultural and educational events in support of people with epilepsy, especially with Dravet syndrome. EPICANA has plans to organise epilepsy and other similar meetings of whole families, charity and cultural events, but also focuses on targeted financial assistance to families through the purchase of necessary compensatory aids and rehabilitation, emergency services, medical interventions not covered by insurance companies, etc.
The establishment of the non-profit organisation Epicana came about due to the illness of our daughter Elen.