Whakarāpopototia te tuhinga:  Ko te nuinga o ngā whaea e moemoea ana ki ngā rā whānau, ki ngā tohu me ngā marena o ā rātau tamariki. Engari ko te mahi nui a Jodie Barden, ko te whakarite i nga tangihanga o ana tamahine tokorua, i te mea e mohio ana kaore tetahi o raua e pakeke i te mea he mate tino onge. Ko Mrs. Barden, 28, te whaea o Ella, tokowaru tau, me Chloe, kotahi tau, e rua nei e mate ana i te Cockayne Syndrome, ā, e 12 noa iho te roa o to rātau oranga. Ko te Cockayne Syndrome he mate iranga onge, e tohu ana i te kore o te taumaha, te koroheketanga o mua, te punaha uaua kore me te upoko iti. Panuku ki raro mō te ataata. Ko Jodie Barden, 28, kua akiakihia ki te whakamahere i nga tangihanga o ana tamahine a Ella, e waru (taha maui) me Chloe, kotahi (taha matau) na te mea he mate iranga onge a Cockayne Syndrome e homai ana ki a raatau he oranga 12 noa iho. I te tau 2013, ka haehae a Mrs Barden i tōna matenga kia whiwhi moni ai mō tētahi kaupapa atawhai mō te mate Cockayne Syndrome. Kei te whakaahuahia ia i konei me tana tamahine a Ella, e pakeke ana i mua i te wa e pa ana ki te mate pukupuku. Ko te nuinga o te wā, kāore te hunga e pāngia ana e te mate nei e ora ki te kite i a rātau tau taiohi, ā, ko te nuinga o te wā ka mate i te mate pneumonia. I te kitenga o te matenga o ana tamariki, kua whakaritea kētia e Mrs Barden te tangihanga o āna tamahine tokorua me tana tāne, a Luke, e 28 hoki ōna tau. Ko te kaihoahoa whakairoiro o mua, ko ia inaianei te kaitiaki o nga kotiro i te wa katoa, i mea: 'Kahore he rongoa mo ta raatau mate, kaore hoki i te nui nga korero a nga taakuta, na ka ngana noa matou ki te whakamarie i a raatau i a raatau e noho ana ki a maatau. 'Ka ngaro i te mutunga o to rātau kitenga me te rongo, ā, ina tae mai taua wā, e hiahia ana mātou kia taea te whakarato i tētahi wāhi e taea ai e rātau te whakangahau tonu.' Ko te mate nei e puta ai te koroheketanga wawe, ahakoa e whitu tau te tawhiti o ngā kōtiro, he ōrite tonu te pakeke o rātau. I tēnei wā kei te wiri a Ella, nā reira he uaua te inu mai i te kapu, ā, ko ngā kupu anake e taea ana e ia te kī ko te 'ae' me te 'hua'. Kāore anō a Chloe kia haere, ā, kāore pea ia e eke ki tēnei taumata. Engari ahakoa kāore e taea e rātau te kōrero, e ai ki a Mrs Barden, kāore rātau e kore e whakamōhio i ā rātau hiahia mā te tohu. Ka mea ia: 'He tino pai rāua...
Ko nga tamahine a Jodie Barden, ko Ella, 8 tau, ko Chloe, 1 tau, he mate a Cockayne Syndrome. Ko tēnei mate iranga onge e kore ai rātau e ora ki te taiohi. Ko Mrs. Barden, 28, i raru i te whakamahere i te tangihanga o tana tamahine. I tēnei wā e ngana ana te whānau ki te whakamahi i te wā e toe ana ki a rātou.