{"id":9556,"date":"2026-09-30T10:38:42","date_gmt":"2026-09-30T08:38:42","guid":{"rendered":"https:\/\/xfragil.cat\/?p=9556"},"modified":"2026-09-30T11:36:18","modified_gmt":"2026-09-30T09:36:18","slug":"primera-trobada-estatal-davies-i-avis-amb-nets-i-netes-amb-sindrome-x-fragil","status":"publish","type":"post","link":"https:\/\/xfragil.cat\/ca\/primera-trobada-estatal-davies-i-avis-amb-nets-i-netes-amb-sindrome-x-fragil\/","title":{"rendered":"Primera trobada estatal d\u2019\u00e0vies i avis amb nets i netes amb S\u00edndrome X Fr\u00e0gil"},"content":{"rendered":"<h2><span lang=\"es\" style=\"font-family: 'Calibri',sans-serif;\">\u00c0vies i avis que sostenen: un tresor familiar<\/span><\/h2>\n<h3><span lang=\"es\" style=\"font-family: 'Calibri',sans-serif;\">Un grup que va n\u00e9ixer a trav\u00e9s de les pantalles\u00a0<\/span><\/h3>\n<p class=\"isselectedend\"><span style=\"font-family: 'Calibri',sans-serif;\">L\u2019any 2021, les videotrucades van ajudar moltes fam\u00edlies a mantenir-se a prop. L\u2019Associaci\u00f3 Catalana S\u00edndrome X Fr\u00e0gil ja oferia grups d\u2019ajuda m\u00fatua per a mares, pares, germanes i germans, i ens vam fer una pregunta: <strong>i les \u00e0vies i els avis?<\/strong><\/span><\/p>\n<p class=\"isselectedend\"><span style=\"font-family: 'Calibri',sans-serif;\">Cada vegada s\u00f3n m\u00e9s presents en el dia a dia dels seus nets i netes. D\u2019aqu\u00ed va n\u00e9ixer un petit grup d\u2019\u00e0vies i avis de diferents comunitats aut\u00f2nomes, amb ganes d\u2019entendre millor la s\u00edndrome X fr\u00e0gil i, sobretot, de compartir neguits i alegries amb persones que vivien situacions semblants.<\/span><\/p>\n<p class=\"isselectedend\"><span style=\"font-family: 'Calibri',sans-serif;\">Despr\u00e9s de cinc anys de trobades quinzenals, va arribar el moment de con\u00e8ixer-se en persona. Aquest dissabte ens vam reunir amb \u00e0vies i avis d\u2019Andalusia, la Comunitat Valenciana, la Comunitat de Madrid i Catalunya. Tamb\u00e9 s\u2019hi van sumar persones que fins ara no formaven part del grup.<\/span><\/p>\n<h3><span lang=\"es\" style=\"font-family: 'Calibri',sans-serif;\"><img fetchpriority=\"high\" decoding=\"async\" class=\"alignnone size-medium wp-image-9559\" src=\"https:\/\/xfragil.cat\/wp-content\/uploads\/2026\/09\/2-294x300.jpeg\" alt=\"\" width=\"294\" height=\"300\" srcset=\"https:\/\/xfragil.cat\/wp-content\/uploads\/2026\/09\/2-294x300.jpeg 294w, https:\/\/xfragil.cat\/wp-content\/uploads\/2026\/09\/2-768x784.jpeg 768w, https:\/\/xfragil.cat\/wp-content\/uploads\/2026\/09\/2.jpeg 845w\" sizes=\"(max-width: 294px) 100vw, 294px\" \/><\/span><\/h3>\n<h2><span lang=\"es\" style=\"font-family: 'Calibri',sans-serif;\">Quatre hores de cam\u00ed compartit<\/span><\/h2>\n<p class=\"isselectedend\"><span style=\"font-family: 'Calibri',sans-serif;\">A les deu del mat\u00ed, la J\u00falia i en Roger, dos joves del Programa d\u2019Autodeterminaci\u00f3, van donar la benvinguda als participants i van lliurar les acreditacions, preparades amb suport visual per facilitar-los la tasca.<\/span><\/p>\n<p class=\"isselectedend\"><span style=\"font-family: 'Calibri',sans-serif;\">La presidenta de l\u2019Associaci\u00f3, Lidia M\u00e9ndez, va inaugurar la trobada amb unes paraules que ens van acompanyar fins al final:<\/span><\/p>\n<p class=\"isselectedend\"><strong><span style=\"font-family: 'Calibri',sans-serif;\">\u00abDe aqu\u00ed hoy saldr\u00e9is de diferente manera a como vinisteis\u00bb.<\/span><\/strong><\/p>\n<p class=\"isselectedend\"><span style=\"font-family: 'Calibri',sans-serif;\">Anna Minguella, gerent de l\u2019Associaci\u00f3 i impulsora del grup, va agrair la participaci\u00f3 de tothom. Les \u00e0vies havien batejat la trobada com <strong>\u00abl\u2019esdeveniment de l\u2019any\u00bb<\/strong>. Per a l\u2019equip professional tamb\u00e9 ho era: una experi\u00e8ncia que ens anima a imaginar projectes que semblen una utopia i a treballar per fer-los possibles.<\/span><\/p>\n<p class=\"isselectedend\"><span style=\"font-family: 'Calibri',sans-serif;\">Marc Iglesias, psic\u00f2leg de l\u2019Associaci\u00f3, va explicar les manifestacions associades a la s\u00edndrome X fr\u00e0gil, va respondre les preguntes del grup i va compartir informaci\u00f3 sobre estudis relacionats amb el paper de les \u00e0vies i els avis en el desenvolupament dels infants amb discapacitat intel\u00b7lectual.<\/span><\/p>\n<p class=\"isselectedend\"><span style=\"font-family: 'Calibri',sans-serif;\">Despr\u00e9s, la Lidia va compartir la seva experi\u00e8ncia en diferents modalitats educatives i va obrir la reflexi\u00f3 sobre l\u2019escola ordin\u00e0ria, els suports i l\u2019educaci\u00f3 especial.<\/span><\/p>\n<h3><span lang=\"es\" style=\"font-family: 'Calibri',sans-serif;\"><img decoding=\"async\" class=\"alignnone wp-image-9571 size-full\" src=\"https:\/\/xfragil.cat\/wp-content\/uploads\/2026\/09\/3-1.png\" alt=\"\" width=\"810\" height=\"347\" srcset=\"https:\/\/xfragil.cat\/wp-content\/uploads\/2026\/09\/3-1.png 810w, https:\/\/xfragil.cat\/wp-content\/uploads\/2026\/09\/3-1-300x129.png 300w, https:\/\/xfragil.cat\/wp-content\/uploads\/2026\/09\/3-1-768x329.png 768w\" sizes=\"(max-width: 810px) 100vw, 810px\" \/><\/span><\/h3>\n<h2><span lang=\"es\" style=\"font-family: 'Calibri',sans-serif;\">Les veus de les fam\u00edlies<\/span><\/h2>\n<p class=\"isselectedend\"><span style=\"font-family: 'Calibri',sans-serif;\">En Roger i la J\u00falia van servir l\u2019esmorzar mentre f\u00e8iem una pausa per agafar forces.<\/span><\/p>\n<p class=\"isselectedend\"><span style=\"font-family: 'Calibri',sans-serif;\">En David i l\u2019Eli, pares d\u2019en Roger, van compartir els neguits que van viure amb l\u2019arribada del diagn\u00f2stic i els passos que, amb el temps, el seu fill ha anat fent cap a l\u2019autonomia. L\u2019Eli va recordar la primera vegada que en Roger li va dir que volia anar sol: la por d\u2019aquell moment i, alhora, l\u2019alegria de veure\u2019l avan\u00e7ar.<\/span><\/p>\n<p class=\"isselectedend\"><span style=\"font-family: 'Calibri',sans-serif;\">La Noem\u00ed va donar visibilitat a la realitat de les noies amb s\u00edndrome X fr\u00e0gil i de les fam\u00edlies amb dos fills afectats. Va parlar de la conviv\u00e8ncia amb la J\u00falia i l\u2019Eduard, dos adolescents, i de com les manifestacions de la s\u00edndrome poden diferir entre noies i nois.<\/span><\/p>\n<p class=\"isselectedend\"><span style=\"font-family: 'Calibri',sans-serif;\">A petici\u00f3 del grup, tamb\u00e9 vam escoltar l\u2019Eli i en Miguel, germana i cunyat d\u2019en Jordi, de 46 anys. Van aportar la mirada del vincle familiar i van explicar com \u00e9s la din\u00e0mica de vida en un pis tutelat.<\/span><\/p>\n<p class=\"isselectedend\"><span style=\"font-family: 'Calibri',sans-serif;\">La Dileisi Pacheco va cloure aquest espai convidant les \u00e0vies i els avis que encara no participen en el grup a sumar-s\u2019hi: <strong>un lloc on compartir viv\u00e8ncies i ballar amb les emocions.<\/strong><\/span><\/p>\n<p><img decoding=\"async\" class=\"alignnone wp-image-9563 size-full\" src=\"https:\/\/xfragil.cat\/wp-content\/uploads\/2026\/09\/4.png\" alt=\"\" width=\"1000\" height=\"640\" srcset=\"https:\/\/xfragil.cat\/wp-content\/uploads\/2026\/09\/4.png 1000w, https:\/\/xfragil.cat\/wp-content\/uploads\/2026\/09\/4-300x192.png 300w, https:\/\/xfragil.cat\/wp-content\/uploads\/2026\/09\/4-768x492.png 768w\" sizes=\"(max-width: 1000px) 100vw, 1000px\" \/><\/p>\n<h3><span lang=\"es\" style=\"font-family: 'Calibri',sans-serif;\">Els refugis del cam\u00ed\u00a0<\/span><\/h3>\n<p class=\"isselectedend\"><span style=\"font-family: 'Calibri',sans-serif;\">La muntanya va ser la imatge que ens va ajudar a rec\u00f3rrer les diferents etapes del cam\u00ed d\u2019una fam\u00edlia: el diagn\u00f2stic, la informaci\u00f3, les ter\u00e0pies, l\u2019escola, l\u2019adolesc\u00e8ncia, la vida adulta i l\u2019autonomia.<\/span><\/p>\n<p class=\"isselectedend\"><span style=\"font-family: 'Calibri',sans-serif;\">A cada tram apareixen preguntes noves. Per\u00f2 tamb\u00e9 hi ha refugis: el grup d\u2019\u00e0vies i avis i l\u2019Associaci\u00f3 s\u00f3n espais on aturar-se, sentir-se escoltats i trobar forces per continuar.<\/span><\/p>\n<p class=\"isselectedend\"><span style=\"font-family: 'Calibri',sans-serif;\">Per tancar la trobada, vam convidar les \u00e0vies i els avis a escriure qu\u00e8 els aporta aquest refugi i a deixar-ho al mural de la muntanya.<\/span><\/p>\n<p class=\"isselectedend\"><span style=\"font-family: 'Calibri',sans-serif;\">Les seves paraules parlaven d\u2019esperan\u00e7a i amor, de companyia entre iguals, de comprensi\u00f3 i d\u2019un lloc segur on compartir experi\u00e8ncies. Sobretot, expressaven una certesa: <strong>saber que no estan sols en aquest cam\u00ed.<\/strong><\/span><\/p>\n<h3><img loading=\"lazy\" decoding=\"async\" class=\"alignnone wp-image-9565\" src=\"https:\/\/xfragil.cat\/wp-content\/uploads\/2026\/09\/5-225x300.jpeg\" alt=\"\" width=\"338\" height=\"450\" srcset=\"https:\/\/xfragil.cat\/wp-content\/uploads\/2026\/09\/5-225x300.jpeg 225w, https:\/\/xfragil.cat\/wp-content\/uploads\/2026\/09\/5-768x1024.jpeg 768w, https:\/\/xfragil.cat\/wp-content\/uploads\/2026\/09\/5-1152x1536.jpeg 1152w, https:\/\/xfragil.cat\/wp-content\/uploads\/2026\/09\/5.jpeg 1200w\" sizes=\"(max-width: 338px) 100vw, 338px\" \/><\/h3>\n<h3><span lang=\"es\" style=\"font-family: 'Calibri',sans-serif;\">El dinar i la visita cultural<\/span><\/h3>\n<p class=\"isselectedend\"><span style=\"font-family: 'Calibri',sans-serif;\">Despr\u00e9s de les intervencions, vam compartir un dinar i vam visitar la Casa Batll\u00f3 i altres punts de Barcelona.<\/span><\/p>\n<p class=\"isselectedend\"><span style=\"font-family: 'Calibri',sans-serif;\">Perqu\u00e8 compartir una taula tamb\u00e9 crea vincles. I perqu\u00e8 l\u2019Associaci\u00f3 vol ser tamb\u00e9 un espai de xarxa, creixement, participaci\u00f3 i cultura.<\/span><\/p>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"alignnone wp-image-9567 size-full\" src=\"https:\/\/xfragil.cat\/wp-content\/uploads\/2026\/09\/6.png\" alt=\"\" width=\"1000\" height=\"640\" srcset=\"https:\/\/xfragil.cat\/wp-content\/uploads\/2026\/09\/6.png 1000w, https:\/\/xfragil.cat\/wp-content\/uploads\/2026\/09\/6-300x192.png 300w, https:\/\/xfragil.cat\/wp-content\/uploads\/2026\/09\/6-768x492.png 768w\" sizes=\"(max-width: 1000px) 100vw, 1000px\" \/><\/p>\n<p>Gr\u00e0cies a totes les \u00e0vies i avis que vau fer possible aquesta primera trobada estatal i a totes les persones que hi vau posar temps, experi\u00e8ncia i afecte.<\/p>\n<p>Ens emportem un dia compartit, nous vincles i, sobretot, la certesa que <strong>quan el cam\u00ed es comparteix, es fa una mica m\u00e9s f\u00e0cil.<\/strong><\/p>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"alignnone wp-image-9569 size-full\" src=\"https:\/\/xfragil.cat\/wp-content\/uploads\/2026\/09\/10-Cites.png\" alt=\"\" width=\"1000\" height=\"640\" srcset=\"https:\/\/xfragil.cat\/wp-content\/uploads\/2026\/09\/10-Cites.png 1000w, https:\/\/xfragil.cat\/wp-content\/uploads\/2026\/09\/10-Cites-300x192.png 300w, https:\/\/xfragil.cat\/wp-content\/uploads\/2026\/09\/10-Cites-768x492.png 768w\" sizes=\"(max-width: 1000px) 100vw, 1000px\" \/><\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>\u00c0vies i avis que sostenen: un tresor familiar Un grup que va n\u00e9ixer a trav\u00e9s de les pantalles\u00a0 L\u2019any 2021, les videotrucades van ajudar moltes fam\u00edlies a mantenir-se a prop. 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