{"id":45714,"date":"2024-06-27T06:04:16","date_gmt":"2024-06-27T04:04:16","guid":{"rendered":"https:\/\/novanews.co.za\/tygerburger\/uitdagings-van-jeug-met-spierdistrofie-dieper-as-net-fisiek-20240627\/"},"modified":"2025-03-20T02:28:43","modified_gmt":"2025-03-20T00:28:43","slug":"uitdagings-van-jeug-met-spierdistrofie-dieper-as-net-fisiek-20240627","status":"publish","type":"post","link":"https:\/\/novanews.co.za\/tygerburger\/uitdagings-van-jeug-met-spierdistrofie-dieper-as-net-fisiek-20240627\/","title":{"rendered":"Uitdagings van jeug met spierdistrofie ‘dieper as net fisiek’"},"content":{"rendered":"\n

M<\/span>et Jeugmaand en die opgewondenheid wat gepaard gaan met jong mense wat byeenkomste bywoon ter herdenking van Jeugdag, is daar \u2019n ander groep jong mense wie se prentjie nie so helder en blink lyk nie. <\/p>\n\n\n\n

TygerBurger<\/em> het met Samantha Muller, \u2019n maatskaplike werker van die Muscular Dystrophy Foundation of South Africa, gepraat oor die uitdagings waarmee die jeug met spierdistrofie in die gesig gestaar word.<\/p>\n\n\n\n

\u201cKinders met spierdistrofie ervaar talle uitdagings,\u201d s\u00ea Muller.<\/p>\n\n\n\n

Sy plaas gewoonlik kinders by Astra as sy weet die huislike omstandighede is ongunstig, maar gedurende vakansies sluit die skool en koshuis. <\/p>\n\n\n\n

Sy vertel van \u2019n seun wat in Mei 18 jaar oud geraak het, maar wat nog steeds skool by Astra Special Needs School gaan.<\/p>\n\n\n\n

\u201cAstra gaan hom hou tot die einde van die jaar omdat die omstandighede by die huis nie gunstig is nie. Skoolvakansies vereis egter dat die kinders huis toe gaan, en Astra is die enigste spesiale skool met \u2019n naweekkoshuis,\u201d s\u00ea sy. <\/p>\n\n\n\n

Die seun moet nou vir residensi\u00eble sorg aansoek doen omdat sy familie hom nie kan akkommodeer nie. <\/p>\n\n\n\n

\u201cHierdie kind het Duchenne-spierdistrofie en sukkel met asemhaling. Die huislike omstandighede is hartseer en dikwels gevaarlik,\u201d s\u00ea sy.<\/p>\n\n\n\n

Omstandighede<\/h3>\n\n\n\n

Muller beskryf haar hartseer toe sy en haar kollega verlede week na Atlantis moes gaan omdat Astra die seun nie verder kon akkommodeer nie. Die huis waarin hy moet bly, is klein, vuil en onveilig. <\/p>\n\n\n\n

Die kombuisdeur het geen skarniere nie en die voorkant van die huis het \u2019n paar jaar gelede afgebrand.<\/p>\n\n\n\n

Die kind slaap op \u2019n matras op die kombuisvloer, en die omstandighede is haglik.<\/p>\n\n\n\n

Muller s\u00ea die meeste kinders lewe in soortgelyke omstandighede, wat haar hart breek. <\/p>\n\n\n\n

Die uitdagings strek verder as net fisieke toestande. <\/p>\n\n\n\n

Muller vertel van \u2019n tiener wat haar tweelingsuster twee weke gelede verloor het. <\/p>\n\n\n\n

By albei susters is Limb Girdle-spierdistrofie gediagnoseer, maar dokters vermoed nou \u2019n ander vorm van spierdistrofie. <\/p>\n\n\n\n

Die oorlewende sussie is tans in die Rooikruis-kinderhospitaal vir haar spierkliniek-afspraak, en haar gesondheid is ook swak.<\/p>\n\n\n\n

Nie altyd so vreugdevol<\/h3>\n\n\n\n

Jeugmaand is nie altyd \u2019n vreugdevolle tyd vir kinders met spierdistrofie nie. <\/p>\n\n\n\n

Muller beskryf \u2019n vergadering met dokters en die ma van die tweelingsussies, waar dit blyk dat die een sussie se hart ingegee het en die oorlewende sussie se hart ook nie in \u2019n goeie toestand is nie.<\/p>\n\n\n\n

\u201cDie gesondheid van kinders met spierdistrofie is uitdagend en hulle is dikwels in gevaar. Families verstaan dikwels nie die erns van die situasie nie,\u201d s\u00ea sy. <\/p>\n\n\n\n

Muller het vertel van die seun in Atlantis wie se pa hom nie hospitaal toe geneem het toe dit nodig was nie.<\/p>\n\n\n\n

\n
\u201cGedurende hul besoek moes die ouma brood op skuld by die winkel koop, wat die haglike omstandighede van hierdie kinders beklemtoon,\u201d s\u00ea sy.<\/div>\n<\/div>\n\n\n\n

Uitdagings<\/h3>\n\n\n\n

In reaksie op hierdie situasie het Muller en haar kollega besluit om \u2019n kospakkie saam te stel vir die gesin, wat \u2019n klein poging is om \u2019n groot behoefte te verlig.<\/p>\n\n\n\n

Hierdie gebeure beklemtoon die uitdagings en dieper probleme waarmee jongmense met gestremdhede in Suid-Afrika gekonfronteer word, veral diegene met spierdistrofie. s\u00ea Muller. <\/p>\n\n\n\n

\u201cDit is \u2019n herinnering aan die dringende behoefte aan beter ondersteuning en hulpbronne vir hierdie kwesbare groep in die samelewing,\u201d s\u00ea sy.<\/p>\n","protected":false},"excerpt":{"rendered":"

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van jeug met spierdistrofie 'dieper as net fisiek' | TygerBurger<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/novanews.co.za\/tygerburger\/uitdagings-van-jeug-met-spierdistrofie-dieper-as-net-fisiek-20240627\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Uitdagings van jeug met spierdistrofie 'dieper as net fisiek'\" \/>\n<meta property=\"og:description\" content=\"Met Jeugmaand en die opgewondenheid wat gepaard gaan met jong mense wat byeenkomste bywoon ter herdenking van Jeugdag, is daar \u2019n ander groep jong mense wie se prentjie nie so helder en blink lyk nie.\" \/>\n<meta property=\"og:url\" content=\"https:\/\/novanews.co.za\/tygerburger\/uitdagings-van-jeug-met-spierdistrofie-dieper-as-net-fisiek-20240627\/\" \/>\n<meta property=\"og:site_name\" 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