Boala de care sufer\u0103<\/a> Albi afecteaz\u0103 sever pielea \u0219i organele interne. Micu\u021bul dezvolt\u0103 vezicule dureroase chiar \u0219i \u00een gur\u0103 \u0219i esofag, ceea ce face imposibil\u0103 hr\u0103nirea pe cale normal\u0103. Este dependent de un tub montat \u00een stomac, care \u00eei asigur\u0103 nutrien\u021bii necesari.<\/p>\n\u201eEste inimaginabil c\u0103 o simpl\u0103 \u00eembr\u0103\u021bi\u0219are poate deveni o surs\u0103 de durere\u201d, spune mama sa, Erin Ward, cu vocea fr\u00e2nt\u0103. C\u00e2nd s-a n\u0103scut, medicii au fost alerta\u021bi de leziunile de pe m\u00e2inile \u0219i picioarele lui. Ini\u021bial, au suspectat c\u0103 ar fi fost provocate \u00een uter, dar testele genetice au confirmat diagnosticul: o form\u0103 sever\u0103 de epidermoliz\u0103 buloas\u0103.<\/p>\n
\u201eCopiii fluture\u201d \u2013 fragili ca aripile lor<\/p>\n
Copiii care tr\u0103iesc cu aceast\u0103 boal\u0103 sunt adesea supranumi\u021bi \u201ecopii fluture\u201d, pentru c\u0103 pielea lor este fragil\u0103 ca o arip\u0103 de fluture. \u00cen cazul lui Albi, \u00eentreaga rutin\u0103 zilnic\u0103 este o lupt\u0103. \u00cen fiecare diminea\u021b\u0103, p\u0103rin\u021bii \u00eei schimb\u0103 timp de dou\u0103 ore pansamentele \u2013 un proces dureros, \u00een ciuda calmantelor administrate.<\/p>\n
\u201eUneori calmantele nu fac fa\u021b\u0103 durerii. Totul depinde de c\u00e2t poate suporta Albi. Trebuie s\u0103 fim extrem de aten\u021bi, iar asta ne ocup\u0103 mare parte din diminea\u021b\u0103\u201d, explic\u0103 Erin.<\/p>\n
Bandajele speciale, care \u00eei acoper\u0103 trupul de la g\u00e2t p\u00e2n\u0103 la degetele de la picioare, au un dublu rol: protejeaz\u0103 pielea \u0219i ajut\u0103 la vindecare.<\/p>\n
Frica de a-\u021bi atinge propriul copil<\/p>\n
Pentru p\u0103rin\u021bi, \u00eenceputul a fost \u00eensp\u0103im\u00e2nt\u0103tor. \u201eLa \u00eenceput, \u00eel transportam pe o pern\u0103, \u00eenvelit \u00een cear\u0219afuri de m\u0103tase. Ne era fric\u0103 s\u0103 \u00eel \u021binem \u00een bra\u021be. Cu timpul, am \u00eenv\u0103\u021bat cum s\u0103-l atingem f\u0103r\u0103 s\u0103-l r\u0103nim\u201d, poveste\u0219te Erin.<\/p>\n
Calum Blackman, tat\u0103l lui Albi, m\u0103rturise\u0219te c\u0103 fiecare interac\u021biune a copilului cu alte persoane vine cu o team\u0103 profund\u0103. \u201eNi se str\u00e2nge inima c\u00e2nd cineva \u00eencearc\u0103 s\u0103 se apropie de el, chiar \u0219i cu inten\u021bii bune. O ran\u0103 se poate vindeca acum \u00een dou\u0103 s\u0103pt\u0103m\u00e2ni, dar mai t\u00e2rziu ar putea dura luni sau s\u0103 nu se vindece deloc.\u201d<\/p>\n
\u00cen public, privirile curioase \u0219i comentariile r\u0103nesc uneori la fel de mult ca boala. Erin spune c\u0103 trebuie constant s\u0103 explice de ce fiul ei este acoperit de bandaje. \u201eOamenii \u00eentreab\u0103 ce i s-a \u00eent\u00e2mplat, dac\u0103 a fost \u00een vreun accident\u2026 Dar pur \u0219i simplu nu \u0219tiu ce \u00eenseamn\u0103 aceast\u0103 boal\u0103.\u201d<\/p>\n
Speran\u021b\u0103 \u00een fa\u021ba unei boli nemiloase<\/p>\n
De\u0219i nu exist\u0103 un tratament curativ<\/a> pentru epidermoliza buloas\u0103, p\u0103rin\u021bii lui Albi sper\u0103 la un viitor \u00een care cercet\u0103rile medicale vor aduce o solu\u021bie. P\u00e2n\u0103 atunci, \u00ee\u0219i dedic\u0103 fiecare zi \u00eengrijirii lui \u0219i \u00eencearc\u0103 s\u0103-i ofere o copil\u0103rie c\u00e2t mai apropiat\u0103 de normal.<\/p>\n\u201eAm vrea s\u0103-l putem \u00eenveli \u00een vat\u0103 \u0219i s\u0103-l protej\u0103m de tot ce l-ar putea r\u0103ni\u2026 dar, \u00een acela\u0219i timp, vrem s\u0103 aib\u0103 o via\u021b\u0103 plin\u0103 de bucurie, de descoperiri, de copil\u0103rie adev\u0103rat\u0103\u201d, \u00eencheie Erin cu emo\u021bie.<\/p>","protected":false},"excerpt":{"rendered":"
Orice atingere, oric\u00e2t de bl\u00e2nd\u0103, \u00eei poate provoca r\u0103ni ad\u00e2nci, motiv pentru care p\u0103rin\u021bii nu…<\/p>\n","protected":false},"author":0,"featured_media":48110,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[4],"tags":[],"class_list":["post-48109","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-extern"],"_links":{"self":[{"href":"https:\/\/247stiri.ro\/index.php\/wp-json\/wp\/v2\/posts\/48109","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/247stiri.ro\/index.php\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/247stiri.ro\/index.php\/wp-json\/wp\/v2\/types\/post"}],"replies":[{"embeddable":true,"href":"https:\/\/247stiri.ro\/index.php\/wp-json\/wp\/v2\/comments?post=48109"}],"version-history":[{"count":0,"href":"https:\/\/247stiri.ro\/index.php\/wp-json\/wp\/v2\/posts\/48109\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/247stiri.ro\/index.php\/wp-json\/wp\/v2\/media\/48110"}],"wp:attachment":[{"href":"https:\/\/247stiri.ro\/index.php\/wp-json\/wp\/v2\/media?parent=48109"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/247stiri.ro\/index.php\/wp-json\/wp\/v2\/categories?post=48109"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/247stiri.ro\/index.php\/wp-json\/wp\/v2\/tags?post=48109"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}