{"id":46818,"date":"2024-01-23T10:54:43","date_gmt":"2024-01-23T09:54:43","guid":{"rendered":"https:\/\/nightwatchepilepsy.com\/kuba-dravet-syndrome\/"},"modified":"2026-09-16T12:26:36","modified_gmt":"2026-09-16T11:26:36","slug":"kuba-dravet-syndrome","status":"publish","type":"post","link":"https:\/\/nightwatchepilepsy.com\/en-us\/kuba-dravet-syndrome\/","title":{"rendered":"Kuba is an 8-year-old boy who suffers from Dravet Syndrome"},"content":{"rendered":"\n<div class=\"et_pb_section_0 et_pb_section et_section_regular et_block_section preset--module--divi-section--default\"><div class=\"et_pb_row_0 et_pb_row et_block_row\"><div class=\"et_pb_column_0 et_pb_column et_pb_column_2_3 et_block_column et_pb_css_mix_blend_mode_passthrough\"><div class=\"et_pb_text_0 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module\"><div class=\"et_pb_text_inner\"><p><span style=\"font-weight: 400;\">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.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">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. <\/span><\/p>\n<\/div><\/div><\/div><div class=\"et_pb_column_1 et_pb_column et_pb_column_1_3 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough\"><div class=\"et_pb_image_0 et_pb_image et_pb_module et_block_module\"><span class=\"et_pb_image_wrap\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/nightwatchepilepsy.com\/wp-content\/uploads\/2024\/01\/NightWatch-Story_Kuba_1_small.jpg\" width=\"640\" height=\"640\" srcset=\"https:\/\/nightwatchepilepsy.com\/wp-content\/uploads\/2024\/01\/NightWatch-Story_Kuba_1_small.jpg 640w, https:\/\/nightwatchepilepsy.com\/wp-content\/uploads\/2024\/01\/NightWatch-Story_Kuba_1_small-480x480.jpg 480w\" sizes=\"(min-width: 0px) and (max-width: 480px) 480px, (min-width: 481px) 640px, 100vw\" class=\"wp-image-37739\" title=\"NightWatch-Story_Kuba_1_small\" \/><\/span><\/div><\/div><\/div><\/div><div class=\"et_pb_section_1 et_pb_section et_section_regular et_block_section preset--module--divi-section--default\"><div class=\"et_pb_row_1 et_pb_row et_pb_row_1-4_1-2_1-4 et_block_row et_block_row_1-4_1-2_1-4\"><div class=\"et_pb_column_2 et_pb_column et_pb_column_1_4 et_block_column et_pb_css_mix_blend_mode_passthrough\"><div class=\"et_pb_image_1 et_pb_image et_pb_module et_block_module\"><span class=\"et_pb_image_wrap\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/nightwatchepilepsy.com\/wp-content\/uploads\/2024\/01\/NightWatch-Story_Kuba_2_big.jpg\" width=\"720\" height=\"1280\" srcset=\"https:\/\/nightwatchepilepsy.com\/wp-content\/uploads\/2024\/01\/NightWatch-Story_Kuba_2_big.jpg 720w, https:\/\/nightwatchepilepsy.com\/wp-content\/uploads\/2024\/01\/NightWatch-Story_Kuba_2_big-480x853.jpg 480w\" sizes=\"(min-width: 0px) and (max-width: 480px) 480px, (min-width: 481px) 720px, 100vw\" class=\"wp-image-37784\" title=\"NightWatch-Story_Kuba_2_big\" \/><\/span><\/div><\/div><div class=\"et_pb_column_3 et_pb_column et_pb_column_1_2 et_block_column et_pb_css_mix_blend_mode_passthrough\"><div class=\"et_pb_text_1 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module\"><div class=\"et_pb_text_inner\"><p><span style=\"font-weight: 400;\">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.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">In addition, patients with Dravet syndrome are at extremely high risk of SUDEP, which is <\/span><span style=\"font-weight: 400;\">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.<\/span><\/p>\n<\/div><\/div><\/div><div class=\"et_pb_column_4 et_pb_column et_pb_column_1_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough\"><div class=\"et_pb_image_2 et_pb_image et_pb_module et_block_module\"><span class=\"et_pb_image_wrap\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/nightwatchepilepsy.com\/wp-content\/uploads\/2024\/01\/NightWatch-Story_Kuba_3_big.jpg\" width=\"720\" height=\"1280\" srcset=\"https:\/\/nightwatchepilepsy.com\/wp-content\/uploads\/2024\/01\/NightWatch-Story_Kuba_3_big.jpg 720w, https:\/\/nightwatchepilepsy.com\/wp-content\/uploads\/2024\/01\/NightWatch-Story_Kuba_3_big-480x853.jpg 480w\" sizes=\"(min-width: 0px) and (max-width: 480px) 480px, (min-width: 481px) 720px, 100vw\" class=\"wp-image-37790\" title=\"NightWatch-Story_Kuba_3_big\" \/><\/span><\/div><\/div><\/div><\/div>\n","protected":false},"excerpt":{"rendered":"<p>Kuba&#8217;s arrival into the world was already difficult, as a 6-week-old baby, he had his first epileptic seizure.<\/p>\n","protected":false},"author":3,"featured_media":46819,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[74],"tags":[],"class_list":["post-46818","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-uncategorized-en-us"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.5 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Kuba suffers from Dravet Syndrome | A NightWatch Story<\/title>\n<meta name=\"description\" content=\"Kuba&#039;s arrival into the world was already difficult, as a 6-week-old baby, he had his first epileptic seizure.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/nightwatchepilepsy.com\/en-us\/kuba-dravet-syndrome\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Kuba&#039;s arrival into the world was already difficult, as a 6-week-old baby, he had his first epileptic seizure.\" \/>\n<meta property=\"og:description\" content=\"There are times when children, and also those affected by epilepsy, do not want to know anything about their illness.\" \/>\n<meta property=\"og:url\" content=\"https:\/\/nightwatchepilepsy.com\/en-us\/kuba-dravet-syndrome\/\" \/>\n<meta property=\"og:site_name\" content=\"NightWatch\" \/>\n<meta property=\"article:publisher\" content=\"https:\/\/www.facebook.com\/EpilepsySeizureDetectionEN\" \/>\n<meta property=\"article:published_time\" content=\"2024-01-23T09:54:43+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2026-09-16T11:26:36+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/nightwatchepilepsy.com\/wp-content\/uploads\/2023\/12\/NightWatch_story_Kerstin_1.jpg\" \/>\n\t<meta property=\"og:image:width\" content=\"768\" \/>\n\t<meta property=\"og:image:height\" content=\"1024\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/jpeg\" \/>\n<meta name=\"author\" content=\"Danny Reiffers\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:title\" content=\"Elen, a brave girl with Dravet Syndrome | A NightWatch Story\" \/>\n<meta name=\"twitter:description\" content=\"When Elen came into the world, at first glance she was a healthy baby. 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