Pfupisa nyaya yacho:  Vanaamai vakawanda vanorota nezvemisi yokuzvarwa kwevana vavo, kupedza kudzidza uye michato. Asi Jodie Barden ane basa rinorwadza rokuronga mariro avanasikana vake vose vari vaviri, achiziva kuti hapana nomumwe wavo achava munhu akura nemhaka yechirwere chisingawanzoitiki. Mai Barden, vane makore 28, ndiamai vaElla ane makore masere okukura naChloe ane gore rimwe chete, vose vari vaviri vanotambura neCockayne Syndrome uye vane tarisiro yokurarama yamakore 12 bedzi. Cockayne Syndrome chirwere chisingawanzoitiki chemajini, chinoratidzwa nokusakwanisa kuwedzera uremu, kukwegura nguva isati yakwana, urongwa hwemitsipa husina kunyatsokura uye musoro muduku. Dzorera pasi kuti uone vhidhiyo. Jodie Barden, ane makore 28, akamanikidzwa kuronga mariro avanasikana vake Ella, ane makore masere (kuruboshwe) naChloe, mumwe (kurudyi) sezvo vane chirwere chisingawanzoitiki chechirwere chinonzi Cockayne Syndrome chinovaita kuti vararame makore 12 chete. Muna 2013, Amai Barden vakagera musoro wavo kuti vaunganidze mari yesangano reCockayne Syndrome. Anoratidzwa pano nemwanasikana wake Ella, uyo anokwegura nguva isati yakwana nemhaka yechirwere ichi. Vanotambura kazhinji kazhinji havapfuuri makore avo ouduku uye kazhinji kazhinji vanofa nepneumonia. Tichifunga nezvomugariro wevana vake, Mai Barden vakatogadzirira mariro avana vavo vose vari vaviri nomurume wavo, Luke, uyo anewo makore 28. Aichimbova mugadziri wemifananidzo, uyo zvino ari mutarisiri wenguva yakazara wavasikana vacho, akati: 'Hakuna mushonga wezvavainawo uye vanachiremba havagoni kutaura zvakawanda, naizvozvo tinongoedza kuvaita kuti vanzwe zvakanaka vachiri nesu. 'Vachapedzisira vasisaoni uye vasisanzwi uye, apo nguva iyoyo inosvika, tinoda kukwanisa kuvapa nzvimbo yavanogona kufara.' Mamiriro acho ezvinhu anokonzera kukwegura nguva isati yasvika, naizvozvo pasinei zvapo nokuti vasikana vacho vakasiyana nemakore manomwe, vanoratidzika kuva vane zera rakafanana. Ella iye zvino ari kudedera, izvo zvinoita kuti kunwa kubva mukapu kunetse, uye anongotaura mashoko akadai sokuti 'hongu' uye'muto.' Chloe haasati ava kukwanisa kufamba uye zvimwe haazombofi akabudirira kuita izvi. Asi kunyange zvazvo vasingakwanisi kutaura, Mai Barden vakati havasi kukundikana kutaura zvavanoda nokushandisa zviratidzo. Iye akati: 'Vose vari vaviri vakanaka kwazvo...
Vanasikana vaJodie Barden Ella, ane makore 8 naChloe, ane makore 1, vane Cockayne Syndrome. Ichi chirwere chisingawanzowaniki chinoreva kuti havagoni kurarama kusvika vava kuyaruka. Mai Barden, vane makore 28, vakatarisana nokurwadziwa kwomwoyo kwokuronga mariro omwanasikana wavo. Mhuri yacho yava kuedza kushandisa zvakanaka nguva yasara.