{"id":38033,"date":"2024-03-06T16:39:06","date_gmt":"2024-03-06T15:39:06","guid":{"rendered":"https:\/\/nightwatchepilepsy.com\/?p=38033"},"modified":"2024-03-06T16:50:54","modified_gmt":"2024-03-06T15:50:54","slug":"het-hartverscheurende-verhaal-van-alessia","status":"publish","type":"post","link":"https:\/\/nightwatchepilepsy.com\/nl\/het-hartverscheurende-verhaal-van-alessia\/","title":{"rendered":"Het hartverscheurende verhaal van Alessia en haar strijd tegen epilepsie"},"content":{"rendered":"<p>[et_pb_section fb_built=&#8221;1&#8243; _builder_version=&#8221;4.24.2&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_row _builder_version=&#8221;4.24.2&#8243; _module_preset=&#8221;default&#8221; custom_margin=&#8221;||||false|false&#8221; custom_padding=&#8221;0px||||false|false&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;4_4&#8243; _builder_version=&#8221;4.24.2&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_text _builder_version=&#8221;4.24.2&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h2><strong>De strijd van een vader om bewustzijn te cre\u00ebren en fondsen te werven.<\/strong><\/h2>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=&#8221;2_3,1_3&#8243; _builder_version=&#8221;4.24.2&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;2_3&#8243; _builder_version=&#8221;4.24.2&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_text _builder_version=&#8221;4.24.2&#8243; _module_preset=&#8221;default&#8221; hover_enabled=&#8221;0&#8243; global_colors_info=&#8221;{}&#8221; sticky_enabled=&#8221;0&#8243;]<\/p>\n<p>Hoi! Mijn naam is Alessia Giddelo en ik wil jullie graag mijn verhaal vertellen.<\/p>\n<p>Ik ben 7 jaar en al sinds mijn geboorte heb ik grote gezondheidsproblemen. Ik had zuurstoftekort, kreeg een zware infectie en kon de eerste dagen niet zelfstandig ademen. Op dag drie kwamen daar nog een hersenbloeding, een hersenvliesontsteking en een hersenontsteking bij. Daardoor heb ik hersenschade opgelopen en lijd ik aan cerebrale parese, of hersenverlamming, en epilepsie. Daarnaast kamp ik ook nog eens met autisme.<\/p>\n<p>Na 89 dagen intensieve behandelingen en zorg mocht ik eindelijk naar huis. Meerdere keren per jaar beland ik in het ziekenhuis door mijn epilepsie en immuniteitsproblemen. In de loop van de tijd ontwikkelde ik het syndroom van West, later Lennox, Gastaut en ESES.<\/p>\n<p>Daarnaast heb ik een mentale en motorische beperking.<\/p>\n<p>Ik kan niet praten en lopen, dus helaas kan ik mama en papa ook niet vertellen wanneer ik pijn heb of mij niet goed voel. Gelukkig word ik goed geholpen door mijn ouders, grootouders en familie.<\/p>\n<p>Het jaar 2023 was het jaar van het dieptepunt. Het nieuwe jaar startte ik in het ziekenhuis. Ik moest drie operaties ondergaan waarvan twee hersenoperaties. Ook de epilepsie was verergerd. Helaas krijg ik mijn epilepsie niet onder controle ondanks het uitproberen van verschillende medicatie.<\/p>\n<p>[\/et_pb_text][\/et_pb_column][et_pb_column type=&#8221;1_3&#8243; _builder_version=&#8221;4.24.2&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_image src=&#8221;https:\/\/nightwatchepilepsy.com\/wp-content\/uploads\/2024\/03\/NightWatch_story_Alessia-1-scaled-e1709737299448.jpg&#8221; title_text=&#8221;NightWatch_story_Alessia-1&#8243; _builder_version=&#8221;4.24.2&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_image][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=&#8221;1&#8243; _builder_version=&#8221;4.24.2&#8243; _module_preset=&#8221;default&#8221; background_color=&#8221;#f7f9fd&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_row _builder_version=&#8221;4.24.2&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;4_4&#8243; _builder_version=&#8221;4.24.2&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_text _builder_version=&#8221;4.24.2&#8243; _module_preset=&#8221;default&#8221; hover_enabled=&#8221;0&#8243; global_colors_info=&#8221;{}&#8221; sticky_enabled=&#8221;0&#8243;]<\/p>\n<p>Het meest impactvolle probleem is momenteel de epilepsie. Dat raakt maar niet onder controle. Het laatste half jaar heb ik bijna dagelijks aanvallen. Soms is er eens een dag zonder, andere dagen heb ik er drie op een dag. Ik heb een kwaadaardige vorm van epilepsie of \u2018stille\u2019 epilepsie. Veel mensen denken vooral aan het klassieke beeld van schokken, maar bij mij uit zich dat bijvoorbeeld anders. Ik verstijf en word heel stil, zogenaamde focale aanvallen. Medicatie dempt het wel een beetje, maar de epilepsie duikt altijd op in een andere vorm en is daardoor heel moeilijk behandelbaar.<\/p>\n<p>Wij hebben onlangs een NightWatch aangeschaft zodat papa en mama een melding krijgen als ik \u2019s nachts een epilepsieaanval krijg. Helaas wordt ook dat hier niet terugbetaald.<\/p>\n<p>Daarom heeft papa met de steun van mama besloten dat deze problemen meer aandacht verdienen. Hij wil zijn hobby en liefde voor mij laten samenkomen om meer bewustzijn te cre\u00ebren en geld op te halen zodat de nodige hulpmiddelen aangeschaft kunnen worden.<\/p>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=&#8221;1_2,1_2&#8243; _builder_version=&#8221;4.24.2&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;1_2&#8243; _builder_version=&#8221;4.24.2&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_image src=&#8221;https:\/\/nightwatchepilepsy.com\/wp-content\/uploads\/2024\/03\/NightWatch_story_Alessia-3-scaled-e1709737467438.jpg&#8221; title_text=&#8221;NightWatch_story_Alessia-3&#8243; _builder_version=&#8221;4.24.2&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_image][\/et_pb_column][et_pb_column type=&#8221;1_2&#8243; _builder_version=&#8221;4.24.2&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_image src=&#8221;https:\/\/nightwatchepilepsy.com\/wp-content\/uploads\/2024\/03\/NightWatch_story_Alessia-5-scaled-e1709737376519.jpg&#8221; title_text=&#8221;NightWatch_story_Alessia-5&#8243; _builder_version=&#8221;4.24.2&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_image][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=&#8221;1&#8243; _builder_version=&#8221;4.24.2&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_row column_structure=&#8221;1_4,1_2,1_4&#8243; _builder_version=&#8221;4.24.2&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;1_4&#8243; _builder_version=&#8221;4.24.2&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_image src=&#8221;https:\/\/nightwatchepilepsy.com\/wp-content\/uploads\/2024\/03\/NightWatch_story_Alessia-4-small.jpg&#8221; title_text=&#8221;NightWatch_story_Alessia-4-small&#8221; _builder_version=&#8221;4.24.2&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_image][\/et_pb_column][et_pb_column type=&#8221;1_2&#8243; _builder_version=&#8221;4.24.2&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_text _builder_version=&#8221;4.24.2&#8243; _module_preset=&#8221;default&#8221; hover_enabled=&#8221;0&#8243; global_colors_info=&#8221;{}&#8221; sticky_enabled=&#8221;0&#8243;]<\/p>\n<p>En dus wil papa samen met mijn oom Nicky op 16 juli zo\u2019n 120 uur lang gaan vissen bij hengelclub De Pelikaan in Opgrimbie (Maasmechelen). Doel is om dinsdagmiddag te starten en te vissen tot zondagmiddag 21 juli. De Belgische Epilepsie Liga helpt ons bij de organisatie, dus willen we ook geld inzamelen voor hen. Ook hebben we een crowdfunding opgesteld, waarmee we wat extra hulpmiddelen willen aankopen. \u00a0<\/p>\n<p>De opbrengsten gaan naar de <a href=\"https:\/\/www.epilepsieliga.be\/\" target=\"_blank\" rel=\"noopener\">Belgische Epilepsie Liga <\/a>of crowdfunding voor hulpmiddelen voor Alessia.<\/p>\n<p>Klik op <a href=\"https:\/\/steunactie.be\/actie\/alessia-giddelo\/-31209\" target=\"_blank\" rel=\"noopener\">deze link<\/a>, die u doorverwijst naar een crowdfundingpagina met ons verhaal.<\/p>\n<p>Dank u wel! \ud83d\udc9c<\/p>\n<p>[\/et_pb_text][\/et_pb_column][et_pb_column type=&#8221;1_4&#8243; _builder_version=&#8221;4.24.2&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_image src=&#8221;https:\/\/nightwatchepilepsy.com\/wp-content\/uploads\/2024\/03\/NightWatch_story_Alessia-2-small.jpeg&#8221; title_text=&#8221;NightWatch_story_Alessia-2-small&#8221; _builder_version=&#8221;4.24.2&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_image][\/et_pb_column][\/et_pb_row][\/et_pb_section]<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Hoi! Mijn naam is Alessia Giddelo en ik wil jullie graag mijn verhaal vertellen. Ik ben 7 jaar en al sinds mijn geboorte heb ik grote gezondheidsproblemen. <\/p>\n","protected":false},"author":3,"featured_media":37979,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"","_et_gb_content_width":"","footnotes":""},"categories":[5],"tags":[],"class_list":["post-38033","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-nightwatch-verhalen"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.4 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Het hartverscheurende verhaal van Alessia | Een NightWatch verhaal<\/title>\n<meta name=\"description\" content=\"Hoi! Mijn naam is Alessia Giddelo en ik wil jullie graag mijn verhaal vertellen. 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