Whakarāpopototia te tuhinga:  Hong Kong (CNN) I a ia e tipu ana, ko Mui Thomas, e hiahia ana kia noho hei tauira kākahu - ehara i te hiahia noa iho mō tētahi kotiro taitamariki. Engari kei te mate a Mui i tētahi mate iranga onge e waiho ana i te kiri i runga i tōna mata me tōna tinana kia whero, kia pakaru. "Kare au i tino mohio kaore au i rite ki era atu", e kii ana ia. I whānau mai a ia ki te mate o Harlequin ichthyosis, ko te tikanga he tino matotoru, he maroke, he koroheke tōna kiri - he rite ki ngā kiri ika. Kāore e taea e ia te hikoi engari ka taea e ia te tangi. I te rā e kōrero ana mātou, he iti noa iho te hunga e aro atu ana ki a ia i tana Starbucks i Sai Kung -- he tangata mōhio ia, e mōhiotia ana hoki i te taone o Hong Kong i tupu ake ai ia. Ko te uaua o Mui ki te whakaae ki tona mate me nga urupare a etahi atu ki a ia, i etahi wa, ka waiho ia i te taha o te whakamomori. Engari, ināianei, 22 ōna tau, kāore ia e whakaae kia whakawātea i tōna oranga - he mahi tonu tana, he hākinakina, ā, kei te tīmata ia ki te mahi hei kaikorero tūmatanui - e whakaako ana, e whakaaweawe ana hoki i ētahi atu mō ngā wero o te āhua "rōpū kē". Whai muri i tana wehenga mai i te whanautanga, ko Tina raua ko Rog Thomas, nga kainoho o Hong Kong, i tiimata te whakatipu i a Mui, i te tau kotahi me te hawhe noa iho o tana pakeke. I korerotia ki a rātau kāore i roa tana oranga. E mea ana a Tina, "I hiahia mātou kia whai oranga whānau a ia i te wā e whai wā ana ia". Heoi, ka tiimata a Mui ki te tipu i roto i te taiao whanau aroha a Tina me Rog i whakatupato i a Mui i te toru o ona tau. I a rāua tahi i ako ki te whakahaere i te āhua o tōna kiri. E rua nga wa e kaukau ana ia i ia ra, ko te mea pai kia rua haora ia wa, a, ko nga wahi katoa e haere ana ia, ka mau ia i tetahi putea ki te toru, e wha ranei nga peihana kirīmi e tika ana kia whakamahia e ia i te ra katoa hei aukati i te maroke o tona kiri. E whakaarohia ana ko ia te tuawha o nga tangata e ora ana ki te harlequin ichthyosis. Ko te pakeke rawa he 31 tau. Engari ahakoa he iti noa iho te rerekētanga o te ahua o Mui i a ia e tamariki ana, ka huri i a ia e haere ana ki te kura tuarua. I hiahiatia e te kura i haere ai ia kia haere tahi ia me tētahi kaiāwhina mātauranga, nāna i whakatakoto...
Kei a Mui Thomas tētahi mate iranga onge e waiho ana i tōna kiri kia pakaru, kia pāngia e te mate. I whakarerea i te whanautanga, i whakamanahia e Tina raua ko Rog Thomas a Mui. E 22 ōna tau ināianei, he kaiwhakawa whutupōro, he kaikorero whakaaweawe hoki.