Mal desa\u0165 mesiacov, ke\u010f si jeho rodi\u010dia vypo\u010duli od lek\u00e1rov zdrvuj\u00faci verdikt.\u00a0 Mama Eva: \u201eAj ke\u010f ja som u\u017e od Tom\u00e1\u0161kov\u00fdch \u0161iestich mesiacov tu\u0161ila, \u017ee to nebude dobr\u00e9, lebo sa neot\u00e1\u010dal, nechytal hra\u010dky, motoricky ve\u013emi stagnoval, napriek tomu som ale ne\u010dakala, \u017ee to bude svalov\u00e1 atrofia. Nie\u010do, \u010do som vlastne ani nevedela, \u017ee existuje. A ke\u010f v\u00e1m z\u00a0mosta do prosta povedia, \u017ee \u0161ance na zlep\u0161enie nie s\u00fa takmer \u017eiadne, \u017ee pacienti sa do\u017e\u00edvaj\u00fa dvoch a\u017e piatich rokov, tak toto sa len tak pred\u00fdcha\u0165 ned\u00e1 \u0160tatistiky v\u0161ak Tom\u00e1\u0161 b\u00fara. V\u00a0septembri osl\u00e1vil kr\u00e1snych \u0161estn\u00e1s\u0165 a\u00a0pl\u00e1nov do \u017eivota m\u00e1 habadej. Mnoh\u00e9 ale z\u00e1vis\u00ed od n\u00e1ro\u010dnej oper\u00e1cie chrbtice, ktor\u00fa by mal podst\u00fapi\u0165 po Novom roku. Chalan sa \u0148u doslova te\u0161\u00ed, \u201epreto\u017ee ver\u00edm, \u017ee mi pom\u00f4\u017ee a\u00a0radik\u00e1lne.\u201c A\u00a0podrobne vysvet\u013euje, \u010do ho \u010dak\u00e1: \u201eT\u00e1 oper\u00e1cia je o\u00a0tom, \u017ee mi tam daj\u00fa stabiln\u00e9 ty\u010de, ktor\u00e9 by moju chrbticu vyrovnali a\u00a0stabilizovali v\u00a0tej polohe, aby mi to netla\u010dilo na p\u013e\u00faca. A\u00a0na konci ja vid\u00edm to obrovsk\u00e9 svetlo \u2013 \u017ee v\u0161etko sa podarilo a\u00a0ja u\u017e le\u017e\u00edm len vtedy, ke\u010f le\u017ea\u0165 chcem. \u017de som v\u00e4\u010d\u0161inu d\u0148a na svojom voz\u00edku, hr\u00e1m na kl\u00e1vesoch, sed\u00edm za po\u010d\u00edta\u010dom, ideme na dlh\u0161ie prech\u00e1dzky, z\u00a0kaviarne sa nemus\u00edme pon\u00e1h\u013ea\u0165 na poste\u013e… A\u00a0tak. Ako hovor\u00edm, bude to star\u00fd dobr\u00fd \u017eivot!\u201c<\/p>\n
Lebo teraz m\u00f4\u017ee by\u0165 v\u00a0sede maxim\u00e1lne trikr\u00e1t za de\u0148 po hodine. A\u00a0to je akur\u00e1t \u010das, \u010do sa naje. Na chirurgick\u00fd z\u00e1krok si na Slovensku netr\u00fafli. Tom\u00e1\u0161a bud\u00fa operova\u0165 v\u00a0Nemecku, u\u017e sa bol doktorom aj predstavi\u0165. Vlastne, cel\u00e9 Nemecko si Tomi napl\u00e1noval a\u00a0zorganizoval s\u00e1m. \u201ePostavil n\u00e1s, rodi\u010dov, pred hotov\u00fa vec.\u00a0 Je to \u010disto jeho z\u00e1sluha. S\u00e1m oslovil doktorov, mailoval s\u00a0nimi, poslal dokument\u00e1ciu, vybavil si term\u00edn a\u00a0n\u00e1s potom len takmer jedn\u00fdm dychom o\u00a0v\u0161etkom informoval. V\u00a0zmysle toto a\u00a0takto sa bude dia\u0165,\u201c hovor\u00ed mama Eva a\u00a0Tom\u00e1\u0161 sa nahlas smeje. Prizn\u00e1va, \u017ee to tak naozaj bolo. Tom\u00e1\u0161a \u010dak\u00e1 \u0161tvorhodinov\u00e1 oper\u00e1cia a\u00a0ak v\u0161etko p\u00f4jde pod\u013ea pl\u00e1nov, n\u00e1sledne ka\u017ed\u00e9 tri mesiace sa bude musie\u0165 podrobi\u0165 e\u0161te trom men\u0161\u00edm hodinov\u00fdm z\u00e1krokom. \u201eTo u\u017e bud\u00fa tak\u00e9 doplnkov\u00e9,\u201c potmeh\u00fadsky dod\u00e1 Tom\u00e1\u0161.<\/p>\n
Aktu\u00e1lne je v\u00a0deviatom ro\u010dn\u00edku, \u0161tuduje online, bav\u00ed ho hudba \u2013 ako samouk sa nau\u010dil hra\u0165 na kl\u00e1vesoch, aj kv\u00f4li tomu u\u017e chce ma\u0165 po oper\u00e1cii a\u00a0stl\u00e1\u010da\u0165 kl\u00e1vesy odu\u0161u. Okrem toho je jeho svetom biol\u00f3gia, a\u017e do tej miery, \u017ee \u201ezatia\u013e som v\u00a0stave \u0161tudova\u0165 ju nesk\u00f4r na vysokej \u0161kole. Ve\u010f uvid\u00edme. Ale je to kr\u00e1sny a\u00a0zmyslupln\u00fd odbor.\u201c<\/p>\n
Ak\u00fd je \u017eivot so svalovou atrofiou?\u00a0 Tom\u00e1\u0161:\u00a0 \u201eViem si umy\u0165 zuby, viem robi\u0165 dychov\u00e9 cvi\u010denia, viem obsluhova\u0165 mobil, po\u010d\u00edta\u010d, hra\u0165 na klav\u00edri \u2013 nie je to m\u00e1lo. Samozrejme, mus\u00edm ve\u013emi ve\u013ea rehabilitova\u0165, a\u00a0rob\u00edm to stra\u0161ne r\u00e1d, v\u017edy sa te\u0161\u00edm na fyzioterapeutov. Prijal som svoju diagn\u00f3zu a\u00a0ne\u013eutujem sa. Ni\u010d s\u00a0t\u00fdm neurob\u00edm a\u00a0nikomu to nepom\u00f4\u017ee. M\u00e1m r\u00e1d, ke\u010f je doma veselo, pohodi\u010dka, v\u0161etko o\u00a0SMA m\u00e1m na\u0161tudovan\u00e9, som teda realista, ale \u017eivot si chcem u\u017e\u00edva\u0165, nie pre\u017e\u00edva\u0165. Asi tak.\u201c<\/p>\n
Eva je na opatrovate\u013eskom a\u00a0so synom je non stop. Ocko chod\u00ed do roboty, tak\u017ee z\u00a0jedn\u00e9ho pr\u00edjmu je \u0165a\u017ek\u00e9 uhradi\u0165 v\u0161etko, \u010do starostlivos\u0165 o\u00a0Tom\u00e1\u0161a obn\u00e1\u0161a. Do Adeli sa dostal prv\u00fdkr\u00e1t. \u201eJe to tu neskuto\u010dn\u00e9, tak ve\u013emi som sa sem t\u00fa\u017eil dosta\u0165 a\u00a0oplatilo sa. C\u00edtim zlep\u0161enie \u2013 moje SMA ruky a\u00a0dlane s\u00fa \u017eiv\u0161ie, starostlivos\u0165 je tu vysoko profesion\u00e1lna, fakt, klob\u00fak dole pred Adeli. V\u0161etky terapie sme robili v\u00a0jednej miestnosti, aby som sa nemusel pres\u00fava\u0165, \u010do je v\u00a0mojom pr\u00edpade dos\u0165 vy\u010derp\u00e1vaj\u00face. Na izbe som skomponoval kr\u00e1tku klav\u00edrnu skladbu, jednozna\u010dne je venovan\u00e1 Adeli. A\u00a0ja ver\u00edm, \u017ee ako nov\u00fd \u010dlen Nad\u00e1cie Adeli sa aj v\u010faka podpore dobr\u00fdch \u013eud\u00ed na rehabilit\u00e1cie e\u0161te vr\u00e1tim. Potrebuje to jednak moje telo, ale aj du\u0161a, to mi verte!\u201c<\/p>\n
<\/p>","protected":false},"excerpt":{"rendered":"
Teraz sa vraj m\u00e1 \u201etro\u0161ku dos\u0165 hor\u0161ie\u201c, lebo skoli\u00f3za tla\u010d\u00ed na jednu \u010das\u0165 p\u013e\u00fac, kv\u00f4li \u010domu mus\u00ed v\u00e4\u010d\u0161inu d\u0148a len le\u017ea\u0165. \u201eKeby ma toto tak neobmedzovalo vo v\u0161etkom, vlastne v\u00a0celom \u017eivote, bol by som bol v\u00a0pohode. Fakt, \u017ee v\u00a0pohode,\u201c suver\u00e9nne povie z\u00a0postele Tom\u00e1\u0161. \u0160estn\u00e1s\u0165ro\u010dn\u00fd chalan s\u00a0desivou diagn\u00f3zou SMA. Spin\u00e1lna svalov\u00e1 atrofia.<\/p>\n
Tomino je absol\u00fatny \u00fakaz. Rozradosten\u00fd, nabuden\u00fd, pln\u00fd \u017eivota, el\u00e1nu. \u00a0A\u017e tak, \u017ee jeho mama jednoducho nech\u00e1pe, odkia\u013e t\u00fa energiu berie. Jej syn sa te\u0161\u00ed na ka\u017ed\u00fd \u010fal\u0161\u00ed de\u0148 a\u00a0na v\u0161etko \u010do pr\u00edde. Ke\u010f ona upad\u00e1 \u010di fyzicky alebo psychicky, je to jedine Tomi, ktor\u00fd ju dok\u00e1\u017ee nakopn\u00fa\u0165. Rozpr\u00e1vanie s\u00a0n\u00edm je doslova z\u00e1\u017eitok. Dopriala by som ho ka\u017ed\u00e9mu. Humor, nadh\u013ead a\u00a0absol\u00fatne triezvy poh\u013ead na \u017eivot. Tom\u00e1\u0161 to m\u00e1 v\u00a0hlave geni\u00e1lne upratan\u00e9.<\/p>","protected":false},"featured_media":149946,"template":"","meta":{"_acf_changed":false,"_seopress_robots_primary_cat":"none","_seopress_titles_title":"","_seopress_titles_desc":"","_seopress_robots_index":""},"product_brand":[],"product_cat":[108],"product_tag":[],"class_list":["post-149881","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\/en\/wp-json\/wp\/v2\/product\/149881","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/nadaciaadeli.sk\/en\/wp-json\/wp\/v2\/product"}],"about":[{"href":"https:\/\/nadaciaadeli.sk\/en\/wp-json\/wp\/v2\/types\/product"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/nadaciaadeli.sk\/en\/wp-json\/wp\/v2\/media\/149946"}],"wp:attachment":[{"href":"https:\/\/nadaciaadeli.sk\/en\/wp-json\/wp\/v2\/media?parent=149881"}],"wp:term":[{"taxonomy":"product_brand","embeddable":true,"href":"https:\/\/nadaciaadeli.sk\/en\/wp-json\/wp\/v2\/product_brand?post=149881"},{"taxonomy":"product_cat","embeddable":true,"href":"https:\/\/nadaciaadeli.sk\/en\/wp-json\/wp\/v2\/product_cat?post=149881"},{"taxonomy":"product_tag","embeddable":true,"href":"https:\/\/nadaciaadeli.sk\/en\/wp-json\/wp\/v2\/product_tag?post=149881"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}