Ka taƙaita labarin:  Babu ranar da Jonathan Pitre mai shekara 14 ba ya kuka da azaba. An haife shi da cutar Epidermolysis Bullosa - ko kuma 'fatar malam buɗe ido' - jikinsa ya cika da raunuka masu zurfi waɗanda ba za su taɓa warkewa ba. Riƙe kayan abinci don cin abinci yana da wuya sosai. Yin wanka yana da banƙyama. Gungura ƙasa don bidiyo. Gwagwarmaya: An haife shi da Epidermolysis Bullosa, Jonathan yana cike da raunuka masu zurfi waɗanda ba za su warke ba. Ciwo: Dole ne a yi masa wanka da kuma ɗaure shi kowace rana. Fuskarsa tana da rauni kamar fuka-fukan malam buɗe ido. Aikin kungiya: Jonathan, mai shekara 14, ya ce ba zai iya rayuwa ba tare da mahaifiyarsa Tina ba wanda ke ɗauke da shi da kuma ciyar da shi. 'Ba za ku taɓa sanin ainihin abin da EB yake ba sai dai idan kuna da shi... kawai jin shi, zafin da kuke rayuwa a kowace rana,' saurayi mai banƙyama ya yi sharhi a cikin hira da Ottawa Citizen. 'Ko lokacin da nake barci, lokacin da nake mafarki, har yanzu ina da hankali saboda ina jin wannan ciwo.' Idan ba a sami magani ba, Jonathan zai yi rayuwa shekara 25 ne kawai. Amma da murya da ta fi ta tsufa, Jonathan da ke Ottawa ya faɗi gaskiya: 'Ina bukatar in ci gaba da wannan.' Ɗaya daga cikin mutane 17,000 ne ke fama da wannan cuta. Fata mai lafiya ta kunshi layuka uku, amma Jonathan ya rasa layin tsakiya wanda ke riƙe da ciki da na waje tare. Mafarki: Dole ne ya daina yin wasanni don haka ya mai da hankalinsa ga watsa shirye-shiryen wasanni - kuma masana sun burge shi da balaga da iliminsa. An nuna shi a nan tare da dan wasan hockey na kankara na Vikings Junior. Matsaloli: Dukansu Tina da Jonathan sun ce sun yi ƙoƙari kada su yi tunani game da gaskiyar cewa yana da shekaru 25 na rayuwa. Mai ban sha'awa: Ya ce har ma yana jin zafi lokacin da yake barci amma yana ƙoƙari mafi kyau don 'rayuwa a halin yanzu' Ana kiran masu fama da 'yara' yan kwalliya'saboda raunin fatarsu: kamar yadda fuka-fuki na fuka-fuki. Yanayin ya bayyana Jonathan daga ayyukan yara da yawa. Mai tsananin son wasanni, yana wasan hockey kuma yana son aji na motsa jiki har sai yanayinsa ya sa ba zai iya yin gasa da sauran yara ba. Epidermolysis bullosa (EB) kalma ce ta gama gari...
Jonathan Pitre yana da raunuka masu zurfi a jikinsa wanda ba zai warke ba. Halinsa, Epidermolysis Bullosa, yana da tsawon rai na shekaru 25. Kowace rana yana kururuwa da ciwo yayin da mahaifiyarsa ta wanke shi kuma ta ɗaure shi. Yana son wasanni amma ba zai iya yin wasa ba, yanzu yana kokarin watsa shirye-shiryen wasanni. Don ƙarin bayani game da Jonathan da yanayinsa, ziyarci shafin yanar gizon sadaka Debra.