Working together for a better tomorrow

Join us in helping children and their families who are struggling with a serious disease.
Let’s make their lives harmonious again and give them a hope for a full life.

About us

The organization was established to help children, adults, and their families in their fight against rare and serious forms of epilepsy like Dravet syndrome, West syndrome, Lennox-Gastaut syndrome,
and others.

One of our main goals is a direct and tangible help for patients by providing medical aids and assistive devices, financing costly rehabilitation procedures, respite care, and so forth.

Our organization is also active in raising awareness about the treatments of epilepsy and informing the public about serious impacts these diseases have on the whole families, thus promoting the whole society’s attention to this issue.

Only working together can we make progress fighting these rare and serious diseases.
Will you join us?

You can support our activities and projects with a donation to our transparent account with ČSOB 320696844/0300.
For cross-border payments, use IBAN CZ64 0300 0000 0003 2069 6844.

We will gladly certify your donation and send you a Certificate of donation, which you can use for your tax return purposes.
To claim your Certificate, send a request to info@stopepilepsy.cz or complete the form below.

We support

Naším prvním příjemcem pomoci je čtyřletá holčička Nina.
Nina se narodila jako zdravé miminko. Jako zdravá se jevila až do 4. měsíce, kdy po očkování prodělala první febrilní křeče. Další následovaly v 6. měsíci, když už byla hospitalizovaná na oddělení neurologie v Brněnské dětské nemocnici, kde absolvovala veškerá možná vyšetření, včetně magnetické rezonance, lumbální punkce a eeg. Bohužel již pár hodin po magnetické rezonanci se jí rozjel epileptický záchvat, kdy musela být převezena na oddělení ARO a tam byla intubována.

After all possible tests and genetic examination, the crushing diagnosis came – Dravet syndrome – a severe pharmacoresistant epilepsy linked to a mutation in the SCN1A gene with an unfavorable prognosis. The daily life of a four-member family was crushed by this diagnosis day by day. Nina’s parents have to constantly monitor her and keep her under supervision. Unfortunately, almost every seizure is literally a fight for life. There are so many potential triggers for seizures that it is necessary to constantly monitor her at night with a Nightwatch bracelet and an infrared camera, due to the risk of seizures in connection with sleep phases and an increased risk of sudden unexpected death in epilepsy (SUDEP). In children with Dravet syndrome, the probability of SUDEP is up to 20%.
The most common triggers for seizures include infection, emotional upset such as fear, stress or ordinary childish joy. Even a minimal change in body temperature or a sudden change in weather/pressure are also highly risky factors. Nina’s family, and especially her mother, takes care of her literally 24/7. And due to the complexity of the disease, it is almost impossible for anyone else to care for her other than her mother, who is so connected to her daughter that she is able to best predict the possibility of potential seizures.

Dravet syndrome is not just about epilepsy. It is also associated with many other diagnoses that can deepen over the course of life. In Nina’s case, it is sleep disturbance, autistic traits, delayed psychomotor development, speech problems, unstable walking, balance problems and central hypotonia.
It is precisely because of these associated diagnoses that Nina has to undergo a lot of regular rehabilitation and examinations from an early age, such as cognitive-motor therapy, hipporehabilitation, physiotherapy, occupational therapy, speech therapy and regular psychological examination. These therapies push her forward and improve her both mentally and physically.

Currently, there is no cure for this syndrome. The goal of available treatment methods is to reduce the number of seizures or at least significantly reduce the duration of seizures, thereby improving the quality of life not only of Nina, but also of her entire family.
Unfortunately, even though Nina has a 4-combination of drugs and has been on a strict ketogenic diet under medical supervision for the third year, the seizures cannot be “tamed”. Nina still has seizures that last for about 8 minutes. Some of these seizures require immediate medical attention.
During these seizures, her development regresses and she needs more rehabilitation to get back to the state she was in before the seizure.

You can support our activities and projects with a donation to our transparent account with ČSOB 320696844/0300.
For cross-border payments, use IBAN CZ64 0300 0000 0003 2069 6844.

We will gladly certify your donation and send you a Certificate of donation, which you can use for your tax return purposes.
Pro Potvrzení o přijetí daru nám zašlete žádost e-mailem na info@stopepilepsy.cz nebo jednoduše vyplňte níže uvedený formulář.

Scroll to Top