Whakarāpopototia te tuhinga:  Kāore he rā e haere ana, kāore a Jonathan Pitre, 14 tau, e hamama ana i te mamae. I whānau mai ia ki te mate Epidermolysis Bullosa - he 'kupu ngeru' rānei - kei te kapi tōna tinana i ngā whara hohonu e kore e ora ake. He tino uaua te pupuri i ngā ipu hei kai. Ko te kaukau he mea whakamataku. Panuku ki raro mō te ataata. I whanau mai me te Epidermolysis Bullosa, kei te kapi a Jonathan i nga whara hohonu e kore e ora. Te mamae: Me horoi ia, me whakakī ia ia rā. He pakaru tōna kiri, he rite ki te parirau o te pīpī. Te mahi tahi: I kī a Jonathan, 14, kāore e taea e ia te ora me te kore tōna whaea a Tina e mau ana, e whangai ana i a ia. 'Kaore koe e tino mohio he aha te EB ki te kore koe e whai i te reira... tika te ite i te reira, te mamae e ora koe i roto i nga ra katoa,' te taiohi bandaged kōrero i roto i te uiuiraa ki te Ottawa Citizen. Ahakoa e moe ana ahau, e moemoea ana, kei te mōhio tonu ahau, nā te mea e rongo ana ahau i taua mamae. Ki te kore e kitea he rongoā, ka 25 noa iho pea nga tau e ora ai a Honatana. Engari i runga i te reo e tino nui ake ana i tana tau, ka mea pono a Honatana o Ottawa: 'Me haere tonu ahau.' Kotahi i roto i te 17,000 tāngata e mate ana i te mate iranga. E toru nga paparanga o te kiri hauora, engari kei te ngaro i a Jonathan te paparanga waenganui e mau tahi ana i nga paparanga o roto, o waho. Moemoea: Kua mutu tana mahi hākinakina, nō reira kua tahuri tana aro ki te pānuitanga hākinakina - ā, e miharo ana ngā mātanga ki tōna pakeke me tōna mātauranga. Kei te whakaahuahia ia i konei me tētahi kaitākaro hōkē hukapapa o te Vikings Junior. He uaua: E kii ana a Tina raua ko Jonathan kaore raua e whakaaro ki te meka he 25 tau te roa o tona oranga. He mea whakaaweawe: E kii ana ia ka taea e ia te mamae i a ia e moe ana engari kei te kaha ki te 'ora i tenei wa' Ka kiia nga hunga e mate ana ko nga 'tama pepeke' na te ngoikore o to ratau kiri: he ngoikore ano he parirau pepeke. Ko te āhua o Hōnata i whakaahuatia mai i ngā mahi maha o te tamarikitanga. He tino tangata hākinakina ia, i takaro hoki ia ki te hākinakina, ā, i aroha ki te akomanga hākinakina tae noa ki te wā i kore ai ia e taea te whakataetae ki ētahi atu tamariki. Ko te epidermolysis bullosa (EB) he kupu whānui...
Kei a Jonathan Pitre ngā whara hohonu e pakaru ana puta noa i tona tinana e kore e ora. Ko tōna mate, ko te Epidermolysis Bullosa, he 25 tau te roa o te ora. I nga ra katoa e hamama ana i te mamae i a ia e horoi ana, e takahi ana i a ia. I aroha ia ki ngā hākinakina, engari kāore e taea te tākaro, ināianei kei te whakamātau ia i te pānuitanga hākinakina. Mō ētahi atu kōrero mō Jonathan me tōna āhua, toro atu ki te paetukutuku o Debra Charity.