Te tautoko a ngā hononga aroha i ngā tamariki e pāngia ana e te EB: Te kōrero mō Kira

Te waihanga i ngā wheako whakarerekētanga ora mā roto i ngā hononga aroha

I DEBRA UK, e whakapono ana mātou ko te mahi tahi te mea nui ki te waihanga i ngā whai wāhitanga mō te hunga e noho tahi ana me epidermolysis bullosa (EB). Ina mahi tahi ngā rōpū aroha, ka taea e tātou te wawahi i ngā arai, ā, ka taea hoki ngā moemoeā te whakatutuki. He tauira tino pai te kōrero a Kira mō te whakarerekētanga o ngā oranga e te mahi tahi.

Te hanga i nga mea e kore e taea

Tekau mā tahi ngā tau o Kira, e noho ana me te EB, he mate ira onge, he tino mamae hoki e kiia ana ko te "kiri pūrerehua" nā te mea he ngoikore. Ahakoa te paku waku, ka taea e ia te pupuhi me te haehae i tōna kiri, ka uaua, ka mamae hoki ngā mahi o ia rā, pērā i te kaukau. Mō Kira, ko te whakauru atu ki te haerenga 10-rā a Dreamflight ki Orlando te tikanga kua ngaro pea i a ia te ngahau i te wai me ōna hoa.

Rerenga moemoea He rōpū aroha a te Rōpū Whakahaere Hauora (RH) e kawe ana i ngā tamariki e mate kino ana, e pāngia ana e ngā āhuatanga kino, ki tētahi haerenga kotahi noa iho ki Florida, me te tautoko a tētahi rōpū whakamīharo o ngā tūao hauora neke atu i te 400. He māmā noa iho tā rātou whāinga: kia whai wāhi ia tamaiti ki te wheako i te harikoa me te herekoretanga.

Te huarahi i tutuki ai te mahi tahi

Nā te pūtea tautoko a DEBRA UK, i taea e Dreamflight te whakarato i tētahi kākahu maroke motuhake mā Kira. Nā tēnei taputapu iti engari he mea nui, ka taea e ia te rere i te awa mangere i Typhoon Lagoon, te kaukau i te puna kaukau o te hōtēra, tae atu ki te wheako i te harikoa e kore e warewaretia o te kaukau me ngā aihe i Discovery Cove – me te kore e mamae me te whakawhiti kakahu roa e kore ai ia e noho tawhiti atu i te rōpū.

I mea atu a Zena, te kaiārahi tūao a Kira:

"Me i kore te hūtu maroke, tērā pea kua ngaro i a Kira ēnei whai wāhitanga, kua pau rānei te wā i muri mai ki te whakawhiti i ōna kakahu – he wheako roa, he mamae hoki tēnei, ā, kua roa pea ia e wehe atu ana i tana rōpū."

Te mana o te mahi tahi

I mea atu a Jo Ridley, te Kaiārahi o te Rōpū Dolphin o Dreamflight:

"He mea whakamiharo te noho mai o Kira i roto i tā mātou rōpū. Kāore anō mātou kia tautoko i tētahi tamaiti me te EB i mua, engari nā te ārahi a tana tīma nēhi i taea ai e mātou te tautoko katoa i a ia. Nā Kira tonu i tiaki i a ia anō puta noa i te haerenga. He kotiro rangatahi whakamiharo, he wahine whakahihiri hoki ia!"

I DEBRA, e mōhio ana mātou he mea whakamomori, he mea whakawhāiti hoki te noho tahi me EB. Koia te take putea putanga iti kei te wātea – hei hoatu ki ngā tāngata whai EB he wheako hou me ngā wā harikoa. E ai ki a Shamaila Zaidi, Tumuaki o Tautoko Hapori i DEBRA, e whakamārama ana:

"E tino harikoa ana mātou nā tā mātou tahua i āhei ai a Kira ki te whai wāhi ki tēnei whai wāhitanga kotahi noa iho i te ao. Ngā mihi nui ki a Dreamflight me tō tīma mō te whakatutuki i tēnei."

He aha te hiranga o ngā mahi tahi

E whakaatu ana tēnei pūrākau i ngā mea ka puta ina mahi tahi ngā rōpū aroha: ka tangohia ngā arai, ā, ka taea e ngā tamariki pēnei i a Kira te noho ki tua atu i ngā rohe o tō rātou āhua.

Kimihia ētahi atu kōrero mō ā mātou hononga mahi tahi o nāianei. 

E whakapau kaha ana a Dreamflight ki te whakarite kia whai wāhi, kia whakanuia, kia wātea hoki ia tamaiti ki te pārekareka ki te haerenga mōrearea, me te waihanga i ngā maharatanga ka mau tonu mō te wa katoa.