{"id":140926,"date":"2026-11-04T08:00:35","date_gmt":"2026-11-04T07:00:35","guid":{"rendered":"https:\/\/radiotordera.cat\/radio\/?p=140926"},"modified":"2026-11-04T08:00:36","modified_gmt":"2026-11-04T07:00:36","slug":"el-documental-niel-viure-per-sobreviure-arriba-a-la-biblioteca-per-visibilitzar-lacidemia-propionica-i-recaptar-fons","status":"publish","type":"post","link":"https:\/\/radiotordera.cat\/radio\/?p=140926","title":{"rendered":"El documental \u2018Niel, Viure per sobreviure\u2019 arriba a la biblioteca per visibilitzar l\u2019acid\u00e8mia propi\u00f2nica i recaptar fons"},"content":{"rendered":"\n<h2 class=\"wp-block-heading\">La projecci\u00f3 ser\u00e0 el divendres 6 de novembre, de 6 a 8 de la tarda, i l\u2019entrada t\u00e9 un preu simb\u00f2lic de 7 euros destinat a Sant Joan de D\u00e9u<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">El documental \u2018Niel, Viure per sobreviure\u2019, realitzat per S\u00f2nia Sol\u00eds, es projectar\u00e0 el proper divendres 6 de novembre, de 6 a 8 de la tarda, a la biblioteca. La pe\u00e7a, de 50 minuts, explica la hist\u00f2ria d\u2019en Niel, un nen que conviu amb acid\u00e8mia propi\u00f2nica, una malaltia minorit\u00e0ria, i de la seva fam\u00edlia, amb l\u2019objectiu de donar visibilitat a la malaltia i recaptar fons per a la recerca.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">El documental va n\u00e9ixer de la iniciativa de S\u00f2nia Sol\u00eds, amiga de la fam\u00edlia, i de la necessitat de la mare d\u2019en Niel, l\u2019Andrea, d\u2019explicar la seva viv\u00e8ncia.<\/p>\n\n\n\n<figure class=\"wp-block-audio\"><audio controls src=\"https:\/\/radiotordera.cat\/radio\/wp-content\/uploads\/2026\/11\/Sonia-Solis.mp3\"><\/audio><figcaption class=\"wp-element-caption\">S\u00f2nia Sol\u00eds<\/figcaption><\/figure>\n\n\n\n<blockquote class=\"wp-block-quote is-layout-flow wp-block-quote-is-layout-flow\">\n<p class=\"wp-block-paragraph\">\u201cl\u2019objectiu era donar visibilitat a la malaltia\u201d<\/p>\n<\/blockquote>\n\n\n\n<p class=\"wp-block-paragraph\">La realitzaci\u00f3 ha estat un repte per a Sol\u00eds, que es dedica a la fotografia i no com a documentalista, i ha comptat amb la col\u00b7laboraci\u00f3 de Sant Joan de D\u00e9u, que va obrir les portes al projecte.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">La hist\u00f2ria d\u2019en Niel va comen\u00e7ar amb la prova del tal\u00f3: al cap de sis dies de vida, la fam\u00edlia va rebre una trucada per confirmar un par\u00e0metre alterat. L\u2019acid\u00e8mia propi\u00f2nica \u00e9s una malaltia heredit\u00e0ria recessiva: els dos progenitors en s\u00f3n portadors, tot i no patir-la, i hi havia un 25% de probabilitats que el fill la desenvolup\u00e9s. En el cas d\u2019en Niel, aix\u00ed va ser. La malaltia no t\u00e9 cura i requereix controls i una vida adaptada: medicaci\u00f3 tres cops al dia, dieta estricta baixa en prote\u00efnes, pesatge dels aliments i un bot\u00f3 g\u00e0stric des de fa quasi tres anys.<\/p>\n\n\n\n<figure class=\"wp-block-audio\"><audio controls src=\"https:\/\/radiotordera.cat\/radio\/wp-content\/uploads\/2026\/11\/Niel-1.mp3\"><\/audio><figcaption class=\"wp-element-caption\">Niel 1<\/figcaption><\/figure>\n\n\n\n<blockquote class=\"wp-block-quote is-layout-flow wp-block-quote-is-layout-flow\">\n<p class=\"wp-block-paragraph\">\u201cMoltes vegades m\u2019han dit que no sembla que tingui res, per\u00f2 la feina la fem a casa perqu\u00e8 passi aix\u00f2\u201d<\/p>\n<\/blockquote>\n\n\n\n<p class=\"wp-block-paragraph\">Malgrat aix\u00f2, la mare ha destacat que en Niel \u00e9s un nen molt aut\u00f2nom, que va a l\u2019escola i fa vida com qualsevol altre nen \u201cdintre del que cap\u201d.<\/p>\n\n\n\n<figure class=\"wp-block-audio\"><audio controls src=\"https:\/\/radiotordera.cat\/radio\/wp-content\/uploads\/2026\/11\/Niel-2.mp3\"><\/audio><figcaption class=\"wp-element-caption\">Niel 2<\/figcaption><\/figure>\n\n\n\n<p class=\"wp-block-paragraph\">L\u2019objectiu del documental \u00e9s doble: donar visibilitat a les malalties minorit\u00e0ries i recaptar fons per a la investigaci\u00f3. Les entrades, a 7 euros, es poden adquirir a trav\u00e9s de l\u2019Instagram de S\u00f2nia Sol\u00eds, de la campanya de Sant Joan de D\u00e9u, mitjan\u00e7ant codis QR i tamb\u00e9 a la p\u00e0gina de cultura i esdeveniments de l\u2019Ajuntament. El mateix dia de la projecci\u00f3 tamb\u00e9 es podr\u00e0 fer l\u2019aportaci\u00f3 a la biblioteca. A m\u00e9s, s\u2019ha recordat que hi haur\u00e0 fila zero per a qui vulgui col\u00b7laborar sense poder assistir a la projecci\u00f3. Amb aquesta iniciativa, la fam\u00edlia vol \u201cdonar un cop de m\u00e0 als que vinguin darrere\u201d i contribuir que la recerca sobre aquesta malaltia i altres malalties minorit\u00e0ries no s\u2019aturi.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>La projecci\u00f3 ser\u00e0 el divendres 6 de novembre, de 6 a 8 de la tarda, i l\u2019entrada t\u00e9 un preu simb\u00f2lic de 7 euros destinat a Sant Joan de D\u00e9u El documental \u2018Niel, Viure per sobreviure\u2019, realitzat per S\u00f2nia Sol\u00eds, es projectar\u00e0 el proper divendres 6 de novembre, de 6 a 8 de la tarda, [&hellip;]<\/p>\n","protected":false},"author":9,"featured_media":140930,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_post_was_ever_published":false},"categories":[37,34],"tags":[451,1274,3350,5388,6971,158,6974,181,1131,6973],"class_list":["post-140926","post","type-post","status-publish","format-standard","has-post-thumbnail","category-salut","category-societat","tag-biblioteca","tag-documental","tag-malaltia","tag-minoritaria","tag-niel","tag-salut","tag-sobreviure","tag-societat","tag-solidari","tag-viure"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.7 - 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