Izingane zenyanga

Ilanga liyisitha sabo esikhulu kunazo zonke. Nge-Xeroderma Pigmentosum, isifo sofuzo esingandile, kufanele babalekele bonke ukuxhumana ne-UV. Ubuhlungu bokuhamba lapho empilweni

Ngaphandle, kuyana imvula. Imvula yasehlobo enamafutha futhi efudumele ethulula isibhakabhaka, futhi lokho kungachazwa njengezindawo ezishisayo uma umuntu engekho phakathi kuka-Agasti eMontluel, isigodi esincane esifundeni sase-Auvergne-Rhône-Alpes . Kungamahora we-19, usuku luyashona, kepha, ngaphandle kwamafu, i-dosimeter isabonakala inkomba ephezulu ye-UV. UNowa, ochithe usuku emthunzini, ngaphansi kwamalambu akhipha i-diode, ulungisa isigqoko sakhe. Ngemuva kweminyaka eyisithupha yokuzilolonga, intombazane ayihlali ifika okokuqala. Izibuko zakhe zishaye iwindi le-anti-UV elivikela ubuso bakhe, ngenkathi izingalo zakhe zikhala ngemuva kwentamo. Umuntu omdala unikeza usizo. Ingane yeminyaka ye-10 yehla ngokuzithoba: "Ngiyabonga, yinto yami leyo ebilungile kancane. Kuhleliwe! Le "nto" okukhulunywa ngayo yilesi sesigqoko esingeke saphikwa ngumuntu osomkhathi, ngesibonakaliso esinjenge-bubble ngaphezulu kwesithsithisi futhi, emuva kwentamo, isiteyithingi amabhethri amabili. UNowa usagqoka izendlalelo ezimbili namagilavu. Konke kulungiswe kahle. Kuvikelwe yile ngubo ehlekisayo, angahamba egijima ngaphandle emvuleni. Ukhetha ukuhlala unemilenze eminingi futhi welulele izandla zakhe esiboshwe esibhakabhakeni.

U-Amine wayehlala egula. Amehlo akhe, evuvukele yi-conjunctivitis ephindaphindekile, evuvukele emisebeni encane yelanga

UNowa "ingane yenyanga", igama elimnandi lezingane ezine-xeroderma pigmentosum (XP), isifo esiyintandane esincisha izisulu zalo ukuxhumana nokukhanya kwe-ultraviolet. U-Amine naye ungomunye. Ngaphandle kukaNowa, uyagwaza futhi ahleke ngemuva kwesigqoko sakhe sokubhabha. Yize lo fan edlubulundela ekhweni lakhe, umfana uzama ukuthola umoya othile ngokuphakamisa imaskhi yakhe eceleni. Isenzo esikhanyayo, emthethweni kwenqatshelwe. "Kufanele ukumbhekele," kusho uHamid, uyise. U-Amine kwesinye isikhathi ukhohlwa ukuthi ilanga liyasha. U-Amine uneminyaka eyi-9 kuphela, kepha isikhathi sokungakhathaleli sesidlulile kuye, njengezingane eziyishumi nesishiyagalolunye kuleli kamu elikhethekile lamaholide, elihlelwe yinhlangano uLes Enfants de la Lune * . U-Amine wayeneminyaka engu-4 lapho kwatholakala ukuthi unalesi sifo. "Singasho ukuthi" kuphela "noma" vele "iminyaka ye-4, iminyaka eminingi yokuthola ukukhanya nokubonisana phakathi kwezingane nodokotela abangasizi ngalutho, uyachaza ubaba wakhe. U-Amine wayehlala egula. Amehlo akhe, ayevuvukele nge-conjunctivitis ephindaphindekile, evuvukala emisebeni yelanga elincane, futhi ubuso bakhe babunamagquma. Odokotela babevele besitshela ukuthi simfake izibuko zelanga nezibuko. Kuze kube yilolu suku lukaMeyi 2014 lapho udokotela weSibhedlela saseNecker ebeka khona lesi sifo esibi: "Ingane yakho akumele isibone ukukhanya. "

Mahhala
Mahhala

Ukwethusa kunesihluku. Yonke imindeni ikhumbula isikhathi lapho zizithola zisekupheleni kwesibhedlela, zikhungathekile, zinikezwe ilanga eline-banal nezeluleko ezithile, ngokungazelelwe, zivimba umbono wekusasa, inselelo enkulu: manje, kuzodingeka ukulinda ubusuku ukuze ingane yakhe ikwazi ukufinyelela ngaphandle kokuvikelwa enjabulweni elula, njengokugijima esivandeni. Akuwona kuphela ilanga okufanele ligwenywe, kepha noma yimuphi umthombo wokukhanya okhiqiza i-UV, kufaka phakathi izibani zokufakelwa. Ngosuku olufanayo, kufanele umboze amafasitela emoto, ushintshe izibani ezifuywayo, uthenge izihlungi, ama-bulbs e-LED, amakhethini amnyama. Futhi, ngaphezu kwakho konke, qinisekisa ingane esanda kuncishwa konke ukuthwala kwayo. UWafa Chaabi, umama kaNowa, ungumongameli wenhlangano uLes Enfants de la Lune. Uyawazi lo muzwa wokwethuka nokumangala ngezikhathi zokuqala: "Lapho kutholakala ukuthi isifo sitholakele, usoseshini ukhona ozothatha izintambo. Ngifika nemishini ephelele neminyaka yami yokuhlangenwe nakho. Ngaphambi kwalokho, imindeni yayenza into yayo. Bafaka izingwembe zokushushuluza ezinganeni zabo, bathungatha i-hood nxazonke base beyimboza ngendwangu. Abanye bavele bavalela izivalo zabo baqala ukuhlala ebumnyameni. Namuhla, siqhutshwa kangcono. Sifundisa abazali ukuzivumelanisa nezimo nokubuyekelana. "Endlini yasemakhaya eqashwe ngumnyango, abazali nezingane i-XP yaseFrance bahlangana ngesonto ngesivinini esikhulu: lapha, yilanga elishayayo likhipha imisebenzi yokuqalisa umdlalo ngaphandle. Ngaleso sikhathi, isakhiwo esikhulu somphakathi senziwe umngcwabo. Amavolontiya asoseshini eza ezinsukwini ezimbalwa ngaphambili ngamakhilogremu ezimpahla ezimnyama, okokuhlunga, amakhethini, nama-dosimeter ambalwa we-UV. Injongo: ukumboza isentimitha esincane kunazo zonke sokukhanya kwe-ultraviolet, ukulahla izingxenye ezingeke zivikeleke, ukubeka emigqeni yaphansi komhlaba okungafanele idlule lapho iminyango ivulekile, ukufaka izimpawu zesikhumbuzo nokuthinta inqwaba yezikhwama zemfucumfucu kumabhanoyi .

Esiqiwini sesizinda sikaSaulsaie (Ain), Agasti 9. Izingane azinayo milimitha yesikhumba etholakele Abaningi bagqoka izingilazi. Lesi sifo sibangela ukuphazamiseka kwamehlo.
Esiqiwini sesizinda sikaSaulsaie (Ain), Agasti 9. Izingane azinayo milimitha yesikhumba etholakele Abaningi bagqoka izingilazi. Lesi sifo sibangela ukuphazamiseka kwamehlo © Alvaro Canovas / Paris Match

Kude kude nendawo yokungena, i-Olympe, iminyaka ye-10, ilinde ukuqala kobusuku esikhungweni sezamanzi. Kungekudala i-19 h 30; ngaphandle, kusewusuku olukhulu. Ngakho-ke, ngaphambi kokuphuma, u-Olympe, owayesembozwe kusuka ekhanda kuye ezinzwaneni, egqoka kahle ingubo yakhe yokuzivikela. Njengesihlangu. Konke kusinda, futhi intombazane encane iyazi kahle inqubo. Kwakungukuqala kukanina, u-Emilie Giret, ukuthi kudalwe isigqoko esidumile esashintsha izimpilo zamakhulu ezingane. Ku-2011, lo thisha ekuphathweni kwezemidlalo e-University of Poitiers uqoqe othisha kanye nabafundi ocwaningweni lwezokwelapha "emidlalweni ekhubazekile" ukuze benze umfuziselo we-UV kanye ne-anti-inkungu, eyakhiwe kahle . "Kuncane kakhulu okwakukhona ukusibekela izingane zethu ngenkathi sisendleleni, ngaphandle kwendwangu emhlophe, eyenziwe yiNASA, lapho sabeka khona imaskhi. Bebukeka njengezipoki, bekuphikiswa ngokuphelele. Isigaba sokuhlolwa sithathe isikhathi eside, kanti nenqubo yokuqinisekiswa kwamazinga aseYurophu yathatha iminyaka emithathu, ”kusho yena. Iqinisekisiwe ku-2014, isigqoko senziwa eVienna manje esetshenziswa emhlabeni wonke.

Sihambile eholidini eMoriya nezihlungi, ama-projektha ne-dosimeter

Ngaphandle, ilanga lishisa kancane; ibhasi izolunga kungekudala. Dosimeter esandleni, abanye abazali bangena ngaphakathi emotweni. Kunenkinga eyodwa yokugcina yokuxazulula: amafasitela ambozwe kahle ngamakhethini aminyene, kepha isiketi esincanyana sisavumela i-UV ethile. Isikhwama semfucumfucu siyokwenza iqhinga. Isikhungo samanzi, sinamafasitela amakhulu e-UV. Isifundo sezingane, esizokwazi ekugcineni ukusebenza ngaphambi kokuba usuku luphele ngokuphelele. Ngosuku olwedlule, kwakungekho kuze kube yi-21 h 15 ukuya pony. Ukudlala ngaphandle kokuvikelwa ngokwemvelo, kuvunyelwe ukukhanya kwelanga kuphela. Kukhona imigqila yeLed kanye namabala amakhulu, alethwe yingxenye nguNaima noLakhdar. Abazali bezingane ezintathu, kufaka phakathi iDelia encane, eneminyaka eyi-6 futhi baxilongwa eminyakeni emihlanu eyedlule, bona - njengeminye imindeni eminingi - bathumele imicabango yabo futhi batshala amandla abo onke ukuze indodakazi yabo ingaphuthelwa umuzwa. "Sihambile eholidini laseMorocco sinezihlungi, ama-projektha ne-dosimeter, okungahambi nge-X-ray ngesikhathi sokuhlolwa kwezokuphepha ... Bekunesidingo sokulindela konke, sithinte umphathi wezokuphepha esikhumulweni sezindiza, ahlinzeke izwi nodokotela, kusho uNaima. Ukuhambela kude kuyindida, kepha kwakubalulekile kithi. Besifuna ukuthatha uDelia emaphethelweni olwandle, ogwini, ukuze ezwe umuzwa wesihlabathi ngaphansi kwamatende ezinyawo zakhe, ukuthi amthinte, ukuthi uyazi ukunambitheka kwamanzi kasawoti. Sifaka amabala futhi sicabange ukuthi sisemini. Ekhaya, kuyafana: ingadi yethu kwesinye isikhathi iboniswa njengenkundla yebhola! Kusihlwa, ngaphandle kokuvikelwa, angakwazi ukugoba otshanini, ezwe umoya esihlathini, athinte umhlaba, ajabule nezintuthwane, aphefumulele iphunga lezimbali. Ngabantwana beNyanga, izinto ezincane empilweni zibukeka zinqoba.

Lezi zigqoko zokuzivikela azivikeli ukumamatheka kwazo. Kuthuthukiswe yiqembu elivela e-University of Poitiers, kubiza cishe i-1 000 euros lilinye.
Lezi zigqoko zokuzivikela azivikeli ukumamatheka kwazo. Kuthuthukiswe iqembu elivela e-University of Poitiers, kubiza cishe ama-1 000 euros. © Alvaro Canovas / Paris Match

Ngesikhathi sekoloni, ama-workshop ahlelwa nodokotela abakhethekile. U-Alain Taieb, uprofesa wesifo samazinyo esibhedlela iBordeaux University Hospital, wenza lolu hambo ukuhlangana nabo. Uthi: “Lapho izingane zivikelekile, singasondela esikhathini esijwayelekile sokuphila. Kepha okwamanje, ayinakuphulukiswa. Abafowethu ababili, uThomas noVincent Seris, bayiziguli zokuqala ze-xeroderma pigmentosum ezivikelwe ngokuphelele emisebeni ye-UV. Abazali babo, abasunguli benhlangano yeChildren of the Moon, bakwenqabele ukushona kodokotela abathi, ngasekupheleni kweminyaka ye-1990, babayala ukuthi babayeke baphile ngendlela ejwayelekile, ngaphambi kokuphela okungabekezeleleki kuya eminyakeni eyi-10 noma ye-15 . UThomas noVincent banamuhla i-26. Baphumelele ukufunda futhi bahola izimpilo zabo njengezinsizwa, kude ne-UV. Kepha ukubona izinto kusengaphambili akukwanele ukukhuthaza abazali ngokugcwele. Ubaba ka-Amine Omncane uyavuma ukuthi unosizi futhi uyavuma, wathukuthela, ukuthi ekugcineni yindodana yakhe uqobo eyenqobayo ngezinye izikhathi ukwesabisa kwakhe. U-Amine uyaqhubeka nokugxumela emvuleni. Uqinisekile: ngokuhamba kwesikhathi, uzoba ngusomaqhubu.
* enfantsdelalune.org.

umthombo: https: //www.parismatch.com/Actu/Societe/Les-enfants-de-la-lune-1643301