{"id":48561,"date":"2023-12-12T14:44:13","date_gmt":"2023-12-12T12:44:13","guid":{"rendered":"https:\/\/novanews.co.za\/tygerburger\/sussies-van-brackenfell-sukkel-met-skaars-siekte-20231212\/"},"modified":"2026-03-03T10:15:03","modified_gmt":"2026-03-03T08:15:03","slug":"sussies-van-brackenfell-sukkel-met-skaars-siekte-20231212","status":"publish","type":"post","link":"https:\/\/novanews.co.za\/tygerburger\/sussies-van-brackenfell-sukkel-met-skaars-siekte-20231212\/","title":{"rendered":"Sussies van Brackenfell sukkel met skaars siekte"},"content":{"rendered":"\n<p>Die afgelope paar jaar praat die Louw-gesin nie eintlik oor hul probleme nie.<\/p>\n\n\n\n<p>Dit is te seer om te vertel hoe \u2019n ongeneeslike siekte skielik by twee van jou volwasse kinders gediagnoseer is . . . t\u00e9 privaat.<\/p>\n\n\n\n<div contenteditable=\"false\" data-embed24=\"Images\" data-pos=\"middle\" id=\"embed_2099b076\">\n<div class=\"slide\"><img decoding=\"async\" alt=\"\" data-smallsrc=\"https:\/\/cdn.24.co.za\/files\/Cms\/General\/d\/10496\/8cdb123a8d2a47569bb066658f0f7800.jpeg\" src=\"https:\/\/novanews.co.za\/tygerburger\/wp-content\/uploads\/2025\/03\/4c77e9604a2b47b3958c0cdb57af377e.jpeg\" title=\"Die susters, Loui-anie (links) en Dan-mari Louw.\"><p><\/p>\n<div class=\"caption\">Die susters, Loui-anie (links) en Dan-mari Louw.<\/div>\n<div class=\"img_accreditation\"><span class=\"source\" style=\"display:none;\"><\/span><span class=\"photographer\" style=\"display:none;\"><\/span><\/div>\n<\/div>\n<\/div>\n\n\n\n<p>Maar soos die rekeninge al meer raak, het die gesin van Brackenfell besluit om tog weerloos te wees en hulp te vra, s\u00ea Debora Louw, ma van Loui-anie (24) en Dan-mari Louw (27).<\/p>\n\n\n\n<p>Di\u00e9 noodkreet, wat hulle einde November op \u2019n Backabuddy-blad gedeel het, het harte diep geraak.<\/p>\n\n\n\n<h4 class=\"wp-block-heading\" id=\"h-uit-die-veld-geslaan\">Uit die veld geslaan<\/h4>\n\n\n\n<p>Hierin vertel die sussies van hul stryd met spastiese paraplegie (SPG11), \u2019n skaars en progressiewe neurologiese siekte wat hul mobiliteit stelselmatig aftakel. <\/p>\n\n\n\n<p>Dan-mari was omtrent 20 jaar oud en \u2019n student in Potchefstroom toe Debora besef iets is fout. <\/p>\n\n\n\n<p>\u201cSy het snaaks begin loop en ek het gedink dit is omdat sy onaktief is,\u201d s\u00ea Debora. <\/p>\n\n\n\n<p>Dan-mari self onthou hoe dit gevoel het hoe sy beheer oor haar lyf verloor.<\/p>\n\n\n\n<p>\u201cDit het net gevoel ek kan nie en ek wou net in my kamer bly, want ek kon nie ver loop nie,\u201d s\u00ea Dan-mari.<\/p>\n\n\n\n<p>Debora het haar na \u2019n huisdokter gevat, maar di\u00e9 het ges\u00ea niks is verkeerd nie. Die vermoede dat iets fout is, het egter aan haar bly knaag. Dit het maande (en verskeie ander kenners) geduur voordat sy die diagnose by \u2019n genetiese berader gekry het \u2013 spastiese paraplegie; spesifiek SPG11.<\/p>\n\n\n\n<p>Die gesin was heeltemal uit die veld geslaan. \u201cOns was verbaas \u2013 waar kom dit vandaan?\u201d s\u00ea Debora. Hulle het nog nooit van die siekte gehoor nie; nog minder iemand geken wat daaraan ly.<\/p>\n\n\n\n<p>Die res van die gesin moes ook vir die siekte getoets word. Loui-anie, wat toe 20 was, se uitslag was positief.<\/p>\n\n\n\n<p>\u201cEk was nie hartseer of iets nie,\u201d s\u00ea Loui-ani nou; \u201cnet \u2019n bietjie verstom.\u201d<\/p>\n\n\n\n<h4 class=\"wp-block-heading\" id=\"h-skaars\">Skaars<\/h4>\n\n\n\n<p>Debora, wat \u2019n agtergrond in genetika het, het dadelik verstaan haar kinders het die siekte gekry omdat sy en haar man, Willem, \u2019n ingenieur, albei draers is van die skaars resessiewe geen wat die siekte veroorsaak. Die kanse dat so iets gebeur, is bitter skaars \u2013 nog meer dat dit met twee kinders in een gesin gebeur. Volgens \u2019n onlangse studie wat deur die <span>Frontiers in Neurology<\/span>-joernaal gepubliseer is, het net 0.35 uit 1 000 000 mense w\u00eareldwyd die siekte.<\/p>\n\n\n\n<p>Hul lewens het basies oornag verander. Debora, Willem en hul twee ander kinders, Van Zyl (24; Loui-ani se tweelingbroer) en Zanita (23), kyk al vir die afgelope vyf jaar hulpeloos toe hoe Dan-mari en Loui-anie se spierfunksie al vinniger verswak.<\/p>\n\n\n\n<p>Die uitwerking is verreikend.<\/p>\n\n\n\n<p>Dan-mari het ophou om toerisme te studeer en Loui-anie het haar skoonheidstudies kort n\u00e1 haar diagnose opgeskop.<\/p>\n\n\n\n<p>Die twee susters het by hul ouers in Brackenfell ingetrek. Waar hulle destyds in Laerskool Eversdal en Ho\u00ebrskool Bellville aktief by sport betrokke was, sukkel hulle nou om te loop. <\/p>\n\n\n\n<p>Dan-mari val al redelik baie en hou aan mure vas. Sy gebruik krukke wanneer sy uitgaan.<\/p>\n\n\n\n<p>Die spastisiteit in haar bene beteken dat sy verskriklik skud wanneer sy wakker word. Haar spiere kan al amper glad nie ontspan nie \u201cErger as Elvis,\u201d s\u00ea Debora.<\/p>\n\n\n\n<p>Vir \u2019n ouer is dit moeilik om te aanskou. \u201cNee, dis nie lekker nie.\u201d Haar stem breek. \u201c \u2019n Mens het mos maar droom vir jou kinders\u201d. <\/p>\n\n\n\n<p>Besoeke raak ook al minder soos ander sukkel om te verstaan wat aangaan en met hul lewens voortgaan. <\/p>\n\n\n\n<p>\u201cDit is maar \u2019n alleenstryd met hulle.\u201d<\/p>\n\n\n\n<p>Maar die twee susters is ongelooflik positief, s\u00ea sy trots. \u201cHulle hanteer dit baie beter as wat ek dit hanteer.\u201d<\/p>\n\n\n\n<h4 class=\"wp-block-heading\" id=\"h-astronomiese-koste\">Astronomiese koste<\/h4>\n\n\n\n<p>Intussen moet die gesin probeer om geld in te samel vir die siekte, wat al duurder raak. Twee mense het sedert die stigting van die Backabuddy-blad ingespring en mobiliteitsmotorfietse geskenk. Party het duisende rande gegee.<\/p>\n\n\n\n<p>Hul uitgawes gaan egter nie binnekort stop nie. Die susters moet elke vier maande botox-inspuitings vir spastisiteit kry, wat R16 000 op \u2019n keer kos. Dit word nie deur hul mediese fonds gedek nie.<\/p>\n\n\n\n<p>Dan-mari sien weekliks \u2019n fisioterapeut en Loui-anie elke tweede week. Dit kos hulle meer as R10 000 per maand. Hierdie besoeke gaan heel moontlik vermeerder.<\/p>\n\n\n\n<p>Debora, wat \u2019n onderwyser is, en Willem het tot nou toe self probeer regkom, maar s\u00ea hulle kan nie meer vir lank die mas opkom nie. Hulle moes \u2019n plan maak en die Backabuddy-geldinsameling begin.<\/p>\n\n\n\n<p>Die susters s\u00ea hulle praat nie eintlik oor die siekte nie. Die twee probeer moed hou deur hul oefeninge te doen, s\u00ea hulle.<\/p>\n\n\n\n<p>Loui-ani glo die Here het die siekte op haar pad gesit vir \u2019n rede en dit is iets waaraan sy vasklou.<\/p>\n\n\n\n<p>Besoek die sussies se <a href=\"https:\/\/www.backabuddy.co.za\/champion\/project\/danmari-and-louianie-louw-5761272134459313338?fbclid=IwAR3LMRJ65UG5BHGTyZTDW3oTxu94Sph8A7lZMv0oAAEvmYfv7Ducwpzq_xc_aem_AV0gl4PvArLt2ann8C3cD6-8LBZaXDmBzTmW0YODurwH-IPp2elUWQMfgCYNw0esLfg#:~:text=We%20are%20two%20sisters%20from,both%20us%20and%20our%20family\" target=\"_blank\">Back-a-buddy-blad<\/a> om \u2018n bydrae te maak.<\/p>\n\n\n\n<p><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Di\u00e9 noodkreet, wat &#8216;n gesin van Brackenfell einde November op \u2019n Backabuddy-blad gedeel het, het harte diep geraak. Hierin vertel die sussies van hul stryd met spastiese paraplegie (SPG11), \u2019n skaars en progressiewe neurologiese siekte wat hul mobiliteit stelselmatig aftakel.<\/p>\n","protected":false},"author":20,"featured_media":48563,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_yoast_wpseo_linkdex":"","_yoast_wpseo_content_score":"90","_yoast_wpseo_inclusive_language_score":"90","_yoast_wpseo_is_cornerstone":"","_yoast_wpseo_canonical":"","_yoast_wpseo_opengraph-title":"","_yoast_wpseo_opengraph-description":"","_yoast_wpseo_opengraph-image":"","_yoast_wpseo_opengraph-image-id":"","_yoast_wpseo_twitter-title":"","_yoast_wpseo_twitter-description":"","_yoast_wpseo_twitter-image":"","_yoast_wpseo_twitter-image-id":"","newspack_ads_suppress_ads":false,"newspack_sponsor_sponsorship_scope":"","newspack_sponsor_native_byline_display":"inherit","newspack_sponsor_native_category_display":"inherit","newspack_sponsor_underwriter_style":"inherit","newspack_sponsor_underwriter_placement":"inherit","_crsspst_to_novanewscoza":false,"_crsspst_to_novanewscozabloemnewsexpress":false,"_crsspst_to_novanewscozacityvision":false,"_crsspst_to_novanewscozadistrictmailhelderberg":false,"_crsspst_to_novanewscozaeikestadnuus":false,"_crsspst_to_novanewscozahermanustimes":false,"_crsspst_to_novanewscozakomani-karoo":false,"_crsspst_to_novanewscozakougaexpress":false,"_crsspst_to_novanewscozamthathaexpress":false,"_crsspst_to_novanewscozanoordkaapbulletin":false,"_crsspst_to_novanewscozapaarlpost":false,"_crsspst_to_novanewscozapeexpress":false,"_crsspst_to_novanewscozapeoplespost":false,"_crsspst_to_novanewscozaswartlandgazette":false,"_crsspst_to_novanewscozaudexpress":false,"_crsspst_to_novanewscozavistanews":false,"_crsspst_to_novanewscozavrystaatkroon":false,"_crsspst_to_novanewscozaweskusnuus":false,"_crsspst_to_novanewscozaweslander":false,"_crsspst_to_novanewscozaworcesterstandard":false,"_EventAllDay":"","_EventTimezone":"","_EventStartDate":"","_EventEndDate":"","_EventStartDateUTC":"","_EventEndDateUTC":"","_EventShowMap":"","_EventShowMapLink":"","_EventURL":"","_EventCost":"","_EventCostDescription":"","_EventCurrencySymbol":"","_EventCurrencyCode":"","_EventCurrencyPosition":"","_EventDateTimeSeparator":"","_EventTimeRangeSeparator":"","_EventOrganizerID":"","_EventVenueID":"","_OrganizerEmail":"","_OrganizerPhone":"","_OrganizerWebsite":"","_VenueAddress":"","_VenueCity":"","_VenueCountry":"","_VenueProvince":"","_VenueState":"","_VenueZip":"","_VenuePhone":"","_VenueURL":"","_VenueStateProvince":"","_VenueLat":"","_VenueLng":"","_VenueShowMap":"","_VenueShowMapLink":"","_application":"","_batch_id":"","_company_name":"","_company_tagline":"","_company_twitter":"","_company_video":"","_company_website":"","_custom_id":"12755dda-0b16-4337-b806-0536c1a6a8d1","_EventDuration":"","_EventOrigin":"","_EventTimezoneAbbr":"","_featured":"","_filled":"","_job_expires":"","_job_location":"","_media_credit":"","_media_credit_url":"","_menu_item_menu_item_parent":"","_menu_item_object":"","_menu_item_object_id":"","_menu_item_target":"","_menu_item_type":"","_menu_item_url":"","_menu_item_xfn":"","_navis_media_can_distribute":"","_navis_media_credit_org":"","_OrganizerOrigin":"","_provider":"","_pum_built_in":"","_pum_default_theme":"","_pum_form_conversion_count":"","_remote_id":"","_remote_name":"","_remote_position":"","_report_frequency":"","_report_reference_dates":"","_send_attempts":"","_site_id":"","_sitemap_exclude":"","_sitemap_frequency":"","_sitemap_priority":"","_source_url":"","_subscription_period":"","_subscription_period_interval":"","_subscription_price":"","_tec_slr_enabled":"","_tec_slr_layout":"","_template_type":"","_ticket_end_date":"","_ticket_start_date":"","_tribe_aggregator_allow_multiple_organizers":"","_tribe_aggregator_content_type":"","_tribe_aggregator_file":"","_tribe_aggregator_finalized":"","_tribe_aggregator_hash":"","_tribe_aggregator_import_id":"","_tribe_aggregator_import_name":"","_tribe_aggregator_interactive":"","_tribe_aggregator_origin":"","_tribe_aggregator_post_status":"","_tribe_aggregator_preview":"","_tribe_aggregator_source_name":"","_tribe_aggregator_type":"","_tribe_default_ticket_provider":"","_tribe_hide_attendees_list":"","_tribe_rsvp_for_event":"","_tribe_ticket_capacity":"","_tribe_ticket_header":"","_tribe_ticket_show_description":"","_tribe_ticket_show_not_going":"","_tribe_ticket_version":"","_type":"","_VenueOrigin":"","_wp_attachment_context":"","_wp_attachment_image_alt":"","_wp_font_face_file":"","_wp_old_date":"","_yoast_wpseo_estimated-reading-time-minutes":"1","_yoast_wpseo_focuskeywords":"","_yoast_wpseo_focuskw_text_input":"","_yoast_wpseo_keywordsynonyms":"","_yoast_wpseo_primary_block-catalog":"","_yoast_wpseo_primary_category":"1","_yoast_wpseo_primary_job_listing_type":"","_yoast_wpseo_primary_nova_retailer":"","_yoast_wpseo_primary_publication":"","_yoast_wpseo_primary_tribe_events_cat":"","_yoast_wpseo_videositemap-duration":"","_yoast_wpseo_videositemap-rating":"","_menu_item_classes":[],"_tribe_modified_fields":[],"_wp_attachment_backup_sizes":[],"_wp_sugges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