Whakarāpopototia te tuhinga:  Ko te wā tino mīharo tēnei e kanikani ana tētahi papa aroha ki tana tamahine i te kāinga. Engari ko te pātī kanikani mō Eliza, e rima, i whakaritea e tōna pāpā, e Glenn O'Neil, e 42, i tō rātou kāinga i South Carolina nā te mea kei a ia te huaketo AAV9 ā, kei raro te whānau i tētahi rāhui ārai i whakatakotoria e rātou anō. E mate ana te tamaiti e rima tau te pakeke i tētahi mate iranga onge, ka mate rawa hoki, e kiia nei ko Sanfilippo Syndrome, ā, me karo ia i te pāhekoheko ki ngā huakita a te tangata, ka mate pea ia. Panuku ki raro mō te ataata. Te kanikani: Glenn O'Neil, 42, e kanikani ana me tana tamahine iti a Eliza, 5, e whai ana i te Sanfilippo Syndrome me te whanau kua kowhiria e ia te whakakorenga ki te whakanui ake i ona tupono ki te whakaora i te ora. Te hononga o te whānau: Ko te whaea o Cara, ko te papa o Glenn me te tuakana o Beckham, 8 tau, e noho ana ki te kāinga ki a Eliza 24 haora i te ra, e whitu nga ra i te wiki hei tiaki ia ia mai i nga mate. Ko te whānau kei raro i te rāhui ā-tinana, kia kore ai a Eliza e whakapōauau, e hanga ārai mate ki tētahi huaketo motuhake, ko AAV9. Mēnā i hangaia e ia he ārai mate ki tēnei huaketo kāore pea ia e āhei ki te whakamātautau haumanu, nā te mea ka tukuna e AAV9 te rongoā ki roto i te tinana. Koinei anake tōna tūponotanga ki te ora. Kua whakanohoia e tōna whānau i a rātou anō ki raro i te rāhui ā-roto mō ngā marama e iwa kua hipa, hei whakamātau ki te karo i te pāhekoheko ki ētahi atu tāngata. Kua whiriwhiria e te whānau kia kaua e pāhekoheko ki ngā tāngata, ki ngā mea rānei kua pa atu te tangata. Ko te tikanga ko te whaea o Cara, ko te papa o Glenn me te tuakana o Beckham, 8 tau, e noho ana ki te kāinga ki a ia 24 haora i te ra, e whitu nga ra i te wiki hei tiaki i a ia. Ko tōna whaea, ko Cara i whakarere i tana mahi hei tākuta tamariki i te wā e mahi mamao ana a Glenn hei kaitohutohu i Symantec, ā, kāore a Beckham e taea te haere ki tana kura, engari ka mahi mamao i ana mahi kura. Ka kawea mai e te whānau ā rātau kai, ā, i ngā wā ruarua e whai wāhi ai rātau ki te kōrero ki te iwi, ka mau rātau i ngā kopare me ngā karapu. Kotahi noa iho te wā i te wiki e wehe atu ai rātau i te kāinga ki tētahi takutai kau, ki tētahi mara rānei, e taea ai e ngā tamariki te rere noa atu. Mai i te wā i kitea ai te mate o Eliza i te Hōngongoi 2013, kua kohia e te whānau $2.2 miriona mā tētahi whārangi GoFundMe me ētahi atu mahi kohikohi pūtea tuku iho...
E mate ana a Eliza i tētahi mate iranga onge e kiia nei ko Sanfilippo Syndrome. Kua noho tōna whānau i raro i te rāhui mō ngā marama e iwa kua hipa. Ka kawea mai e te whānau ā rātau kai, ā, ka noho ki roto i te rā, i te rā. I ngā wā ruarua ka pāhekoheko rātou ki ngā tāngata ka mau rātou ki ngā kanohi kanohi me ngā kākahu. Kua kohia e te whānau $ 2.2 miriona mō tētahi whakamātautau rongoā mā tētahi whārangi GoFundMe.