O lieku Zolgensma sme sa dozvedeli, ke\u010f Brunko mal u\u017e 2 roky a 2 mesiace. Zolgensma sa ale pod\u00e1va len do veku 2 roky. T\u00e1to g\u00e9nov\u00e1 terapia n\u00e1s minula o 2 mesiace. Nemal to \u0161\u0165astie, aby mu bola aplikovan\u00e1.\u00a0A\u00a0tak je Brunko lie\u010den\u00fd liekom Spinraza, ktor\u00fd sa mu pod\u00e1va ka\u017ed\u00e9 4 mesiace lumb\u00e1lnou punkciou do miechy. Spinraza nelie\u010di, iba zastavuje progres choroby.<\/p>\n
Mus\u00ed ve\u013ea cvi\u010di\u0165, aby jeho svaly neslabli, aby\u00a0vl\u00e1dal d\u00fdcha\u0165 a\u00a0preh\u013ata\u0165 a\u00a0aby ho choroba nepremohla. Jeho \u017eivot je jedna ve\u013ek\u00e1 telocvi\u010d\u0148a. Bruno nevie, \u017ee cvi\u010di\u0165 nie je v ka\u017edej rodine samozrejm\u00e1 z\u00e1le\u017eitos\u0165, ale \u010dinnos\u0165, ktorej sa deti venuj\u00fa iba ke\u010f maj\u00fa chu\u0165. On mus\u00ed. Hoci e\u0161te nevie pre\u010do, vie, \u017ee a\u017e po rannom odcvi\u010den\u00ed m\u00f4\u017ee \u00eds\u0165 do \u0161k\u00f4lky, hra\u0165 sa, \u010di \u00eds\u0165 von alebo na v\u00fdlet. Najprv cvi\u010di\u0165 potom z\u00e1bava.<\/p>\n
V\u010faka cvi\u010deniu, sa pomal\u00fdmi krokmi\u00a0Brunko pos\u00fava vpred a\u00a0u\u010d\u00ed nov\u00e9 veci. Svoj\u00edm \u017eiariv\u00fdm \u00fasmevom, nespo\u010detn\u00fdmi zvedav\u00fdmi ot\u00e1zkami a\u00a0svojou otvorenos\u0165ou rob\u00ed rados\u0165 v\u0161ade, kde pr\u00edde. Je ve\u013emi m\u00fadry, \u0161ikovn\u00fd a\u00a0za\u010dal chodi\u0165 do materskej \u0161koly, medzi zdrav\u00e9 deti. „Iba“ nechod\u00ed, neposad\u00ed\u00a0sa s\u00e1m, neplaz\u00ed, neloz\u00ed, nestoj\u00ed.<\/p>\n
Sna\u017e\u00edme sa mu ako rodi\u010dia zabezpe\u010di\u0165 v\u0161etko, \u010do potrebuje, aby sme mu skvalitnil jeho \u017eivot, ktor\u00fd m\u00e1 u\u017e aj tak ochudobnen\u00fd o\u00a0oby\u010dajn\u00e9 veci, ktor\u00e9 by sme mu tak stra\u0161ne chceli dopria\u0165. Rehabilita\u010dn\u00e9 pobyty, pl\u00e1vanie, hipoterapia a pom\u00f4cky, ktor\u00e9 n\u00e1m neprepl\u00e1ca \u0161t\u00e1t n\u00e1s stoja desiatky tis\u00edc euro ro\u010dne.<\/p>\n
Je to ve\u013emi finan\u010dne n\u00e1ro\u010dn\u00e9. Srde\u010dne \u010fakujeme v\u0161etk\u00fdm za podporu Brunka!<\/strong><\/p>","protected":false},"excerpt":{"rendered":" Vol\u00e1m sa Bruno, narodil som sa 6.10.2017 a\u00a0s\u00a0t\u00fdmto sl\u00e1vnym menom som mal v\u00a0\u017eivote dok\u00e1za\u0165 ve\u013ea. No \u017eivot to zariadil inak. Ke\u010f som mal 1 rok, diagnostikovali mi nevylie\u010dite\u013en\u00e9 genetick\u00e9 ochorenie – spin\u00e1lna svalov\u00e1 atrofia II.typu.<\/strong><\/p>\n Dovtedy som sa vyv\u00edjal uk\u00e1\u017ekovo. Bol som siln\u00fd,\u00a0plazil som sa\u00a0a\u00a0sedel. Te\u0161il som sa, \u017ee raz budem\u00a0tak\u00fd ist\u00fd hokejista ako moji bratia Tobias a\u00a0Tade\u00e1\u0161. V\u00a0\u010dase, ke\u010f som sa mal u\u017e za\u010da\u0165 stava\u0165 na nohy za\u010dali prv\u00e9 zn\u00e1mky svalovej slabosti a\u00a0za\u010dal som zab\u00fada\u0165 to, \u010do som u\u017e\u00a0vedel. V \u00a0decembri 2018\u00a0sa mama a oco dozvedeli najhor\u0161iu spr\u00e1vu svojho \u017eivota \u2013 moju diagn\u00f3zu.<\/p>","protected":false},"featured_media":147249,"template":"","meta":{"_acf_changed":false,"_seopress_robots_primary_cat":"none","_seopress_titles_title":"Jeho \u017eivot je jedna ve\u013ek\u00e1 telocvi\u010d\u0148a","_seopress_titles_desc":"Brunko, spin\u00e1lna svalov\u00e1 atrofia II.typu","_seopress_robots_index":""},"product_brand":[],"product_cat":[108],"product_tag":[],"class_list":["post-147183","product","type-product","status-publish","has-post-thumbnail","product_cat-pomoc-potrebuju","first","instock","sold-individually","shipping-taxable","purchasable","product-type-variable-subscription","has-default-attributes"],"acf":[],"_links":{"self":[{"href":"https:\/\/nadaciaadeli.sk\/de\/wp-json\/wp\/v2\/product\/147183","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/nadaciaadeli.sk\/de\/wp-json\/wp\/v2\/product"}],"about":[{"href":"https:\/\/nadaciaadeli.sk\/de\/wp-json\/wp\/v2\/types\/product"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/nadaciaadeli.sk\/de\/wp-json\/wp\/v2\/media\/147249"}],"wp:attachment":[{"href":"https:\/\/nadaciaadeli.sk\/de\/wp-json\/wp\/v2\/media?parent=147183"}],"wp:term":[{"taxonomy":"product_brand","embeddable":true,"href":"https:\/\/nadaciaadeli.sk\/de\/wp-json\/wp\/v2\/product_brand?post=147183"},{"taxonomy":"product_cat","embeddable":true,"href":"https:\/\/nadaciaadeli.sk\/de\/wp-json\/wp\/v2\/product_cat?post=147183"},{"taxonomy":"product_tag","embeddable":true,"href":"https:\/\/nadaciaadeli.sk\/de\/wp-json\/wp\/v2\/product_tag?post=147183"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}