{"id":77368,"date":"2024-03-21T18:01:04","date_gmt":"2024-03-21T16:01:04","guid":{"rendered":"http:\/\/infois.ro\/?p=77368"},"modified":"2024-03-22T08:05:25","modified_gmt":"2024-03-22T06:05:25","slug":"frate-si-sora-tratament-experimental-in-cazul-unei-boli-genetice-rare","status":"publish","type":"post","link":"https:\/\/infois.ro\/?p=77368","title":{"rendered":"Frate \u0219i sor\u0103, tratament experimental \u00een cazul unei boli genetice rare"},"content":{"rendered":"

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Via\u021ba unei familii e o c\u0103l\u0103torie plin\u0103 de momente fericite, dar \u0219i de \u00eencerc\u0103ri. Familia Rebiga se confrunt\u0103 \u00eens\u0103 cu o realitate sf\u00e2\u0219ietoare: doi dintre copiii cuplului sufer\u0103 de o boal\u0103 genetic\u0103 rar\u0103 care le limiteaz\u0103 sever abilit\u0103\u021bile fizice \u0219i cognitive. De\u0219i diagnosticul este descurajator, David \u0219i Antonia au \u0219ansa de a participa la un tratament experimental, \u00eentr-o clinic\u0103 din Canada. Costurile deplas\u0103rii peste ocean \u0219i cazarea pe termen lung sunt \u00eens\u0103 cople\u0219itoare pentru orice familie cu venituri medii din Rom\u00e2nia: 20.000 de euro. \u201eAntonia a fost diagnosticat\u0103 cu paralizie cerebral\u0103 pe c\u00e2nd avea numai trei\u00a0 luni. Dup\u0103 venirea pe lume a lui David am aflat \u00eens\u0103 c\u0103 ambii copii sufer\u0103 de o boal\u0103 mitocondrial\u0103 rar\u0103, cauzat\u0103 de o muta\u021bie a genei SUCLG1. Ulterior ne-am testat \u0219i eu \u0219i so\u021bul \u0219i am aflat c\u0103 suntem purt\u0103torii acestei gene. Se \u00eent\u00e2mpl\u0103 foarte rar aceast\u0103 muta\u021bie, \u00eens\u0103 noi am fost ale\u0219i de\u00a0Dumnezeu s\u0103 ducem aceast\u0103 cruce\u201d, ne-a m\u0103rturisit Cristina, mama lui David, printre lacrimi de suferin\u021b\u0103. \u00cen lupta lor cu o realitate crunt\u0103, p\u0103rin\u021bii au c\u0103utat \u00een permanen\u021b\u0103 solu\u021bii, medici, tratamente inovatoare \u0219i terapii care s\u0103 le \u00eembun\u0103t\u0103\u021beasc\u0103 via\u021ba copiilor lor. \u00cen mijlocul acestei b\u0103t\u0103lii, mama, care lucreaz\u0103 ca asistent personal pentru Antonia, \u0219i tat\u0103l, aflat \u00eenc\u0103 \u00een concediu de cre\u0219tere pentru copil cu handicap, se str\u0103duiesc s\u0103 fac\u0103 fa\u021b\u0103 tuturor dificult\u0103\u021bilor. \"\"<\/p>\n

\u201eNoi, \u00een to\u021bi ace\u0219ti ani am f\u0103cut recuperare cu Antonia \u00een diferite centre din \u021bar\u0103. Facem logopedie de la v\u00e2rsta de un an \u0219i jum\u0103tate, dar f\u0103r\u0103 rezultate. Toate le-am f\u0103cut din venitul nostru, ne-am str\u0103duit c\u00e2t am putut, \u00eens\u0103 o dat\u0103 cu venirea pe lume a lui David, cheltuielile sunt peste puterile noastre. \u00cen plus, nu \u0219tie nimeni ce e \u00een sufletul unei mame c\u00e2nd \u00ee\u0219i vede copiii \u00eentr-o asemenea situa\u021bie. Inima mea e plin\u0103 de durere, neputin\u021b\u0103 \u0219i chin. \u00cencerc s\u0103 fac fa\u021b\u0103 situa\u021biei, s\u0103 fiu puternic\u0103 pentru ei. Trebuie supraveghea\u021bi \u00een permanen\u021b\u0103. Cel mic cum \u00eel pun a\u0219a r\u0103m\u00e2ne, nu se poate \u00eentoarce de pe o parte pe cealalt\u0103, pl\u00e2nge mai mereu, are o stare agitat\u0103 tot timpul\u201d, adaug\u0103 mama. Cu toate acestea, familia Rebiga nu se pred\u0103. Ei continu\u0103 s\u0103\u00a0lupte pentru copiii lor, sper\u00e2nd c\u0103 studiul din Canada le va oferi \u0219ansa de a-\u0219i \u00eembun\u0103t\u0103\u021bi via\u021ba.\u00a0,,Apel\u0103m la generozitatea \u0219i compasiunea dumneavoastr\u0103 pentru a sprijini participarea lui David \u0219i a Antoniei la acest studiu vital programat s\u0103 \u00eenceap\u0103 pe 16 aprilie, iar familia Rebiga ar trebui s\u0103 plece spre Canada cu dou\u0103 zile mai devreme. De fiecare dintre noi depinde \u0219ansa la via\u021b\u0103 a\u00a0unor copii greu \u00eencerca\u021bi de soart\u0103\u201d, spune Vlad Pl\u0103cint\u0103, pre\u0219edintele Asocia\u021biei \u201eSalveaz\u0103 o inim\u0103\u201d.<\/p>\n

\"\"<\/p>\n

Pentru dona\u021bii din partea companiilor accesa\u021bi:\u00a0 https:\/\/salveazaoinima.ro\/david-rebiga\/<\/p>\n

Denumire entitate: Asocia\u021bia \u201eSALVEAZ\u0102 O INIM\u0102\u201d<\/p>\n

CIF: 31015982<\/p>\n

Cont RON: RO05BTRL00701205W82870XX<\/p>\n

Cont EUR: RO28BTRLEURCRT00W8287001<\/p>\n

Cont USD: RO68BTRLUSDCRT00W8287001<\/p>\n

Cod SWIFT: BTRLRO22<\/p>\n

Cod BIC: BTRL<\/p>\n

Banca: Banca Transilvania Boto\u0219ani<\/p>\n","protected":false},"excerpt":{"rendered":"

Via\u021ba unei familii e o c\u0103l\u0103torie plin\u0103 de momente fericite, dar \u0219i de \u00eencerc\u0103ri. Familia… more »<\/span><\/a><\/p>\n","protected":false},"author":2,"featured_media":77369,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[41,32],"tags":[74,15574,17452,3390,40,17451],"aioseo_notices":[],"_links":{"self":[{"href":"https:\/\/infois.ro\/index.php?rest_route=\/wp\/v2\/posts\/77368"}],"collection":[{"href":"https:\/\/infois.ro\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/infois.ro\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/infois.ro\/index.php?rest_route=\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/infois.ro\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=77368"}],"version-history":[{"count":1,"href":"https:\/\/infois.ro\/index.php?rest_route=\/wp\/v2\/posts\/77368\/revisions"}],"predecessor-version":[{"id":77372,"href":"https:\/\/infois.ro\/index.php?rest_route=\/wp\/v2\/posts\/77368\/revisions\/77372"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/infois.ro\/index.php?rest_route=\/wp\/v2\/media\/77369"}],"wp:attachment":[{"href":"https:\/\/infois.ro\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=77368"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/infois.ro\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=77368"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/infois.ro\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=77368"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}