Telethon 2014: ka hakakā ʻana o nā ʻohana i ke kukui

Nīnauele me Laurence Tiennot-Herment, pelekikena o AFM-Téléthon

I ka manawa o ka Telethon 2014, ua pane ʻo Laurence Tiennot-Herment i kā mākou mau nīnau.

E mālama ʻia ana ka paʻi 28 o ka Telethon i kēia hopena pule, he aha ke kumuhana o ka hoʻolaha hou?

Laurence Tiennot-Herment: hoʻokūpaʻa kēia paʻi hou i ka paio o na ohana a me na keiki i kela la i keia la i loaa i ka mai laha ole. I kēia makahiki, ʻehā mau ʻohana ʻelele i ʻike nui ʻia, a ma o lākou, ʻehā mau maʻi laha ʻole i hōʻike ʻia i ka lehulehu.

E haʻi mākou i ka moʻolelo o ʻO Juliette, 2 makahiki, e loaʻa ana i ka Fanconi anemia, ʻO ka maʻi kakaʻikahi i hōʻike ʻia e ka pilikia o ka maʻi leukemia a me ka maʻi kanesa 5 manawa ʻoi aku ka nui ma mua o ke kanaka olakino. He manawa kūpono kēia e kamaʻilio ai e pili ana i ka maʻi maʻi a me nā mea a pau e hana ʻia ma mua o kēia hoʻolaha i ka ʻohana.

E ʻike ʻoe ʻO Lubin, 7 mau makahiki, e loaʻa ana i ka spinal muscular atrophy, debilitation a me ka holomua o ka maʻi neuromuscular. ʻo ia ke kumu atrophy o ka ʻiʻo. E wehewehe pono ana ka AFM i ka hoʻohaʻahaʻa ʻana a me ke kākoʻo ʻana o nā haʻawina Telethon i nā pilikia o ka ʻohana i kēlā me kēia lā.

E ʻO Ilan, 3 makahiki, he mea ʻē aʻe. Loaʻa iā ia ka maʻi ʻo Sanfilippo, kahi maʻi kakaʻikahi o ka ʻōnaehana puʻuwai. Hiki iā ia ke nalowale i ka hele wāwae, ka maʻemaʻe a me ka ʻōlelo inā ʻaʻole mālama ʻia. I kēia hihia kūikawā, ʻaʻole loa, ʻo ka gene therapy wale nō ka hopena. Ua kōkua ʻo AFM i ka noiʻi ʻana me ka hāʻawi ʻana o 7 miliona euros, a no ka manawa mua, ma ʻOkakopa 15, 2013, ua hiki iā Ilan ke pōmaikaʻi mai ka mālama ʻana i ka gene therapy. ʻO kēia ka hoʻāʻo mua ʻana o ka gene therapy o kāna ʻano i kahi keiki.

ʻo ka mea hope akā naʻe ʻaʻole hoʻi ka mea liʻiliʻi, ʻO Mouna, nona ka makahiki 25 i kēia manawa, he maʻi ʻike kakaʻikahi kona, ʻo Leber's Amaurosis. He haiki loa kona kahua ike. ʻO nā haʻawina Telethon i hiki ke loaʻa kālā i ka hoʻāʻo ʻana o ka gene therapy kahi i komo ai ʻo Mouna i ka Halemai Ke Kulanui o Nantes.

He aha kāu loiloi o ka makahiki i hala?

LTH: He maikaʻi loa nā hopena o ka makahiki. Nui aʻe nā hoʻāʻo ʻana i ka lāʻau lapaʻau i nā kānaka. He ʻoiaʻiʻo ka manaʻolana. I ka makahiki 2014, e hoʻolauleʻa mākou i nā makahiki 15 o ka hoʻomohala ʻana i ka lāʻau lapaʻau kūleʻa i hoʻomaikaʻi ʻia i ka Telethon. Ua mālama ʻia ka nui o nā keiki me kēia lāʻau lapaʻau, a ke hana maikaʻi nei lākou. He manaʻolana nui hoʻi ia no ka noiʻi olakino.

Ma kahi o 100 miliona euros e hōʻiliʻili ʻia i kēlā me kēia makahiki ma ka Telethon. Pehea e hoʻohana ʻia ai kēia kālā e kōkua i nā ʻohana?

LTH: ʻO ka mea mua loa, hiki i ka AFM Telethon ke hiki hoʻopaʻa kālā a hoʻolalelale i ka noiʻi ʻana a kau i ka inoa ma luna o nā haneli o nā maʻi kakaʻikahi. Pono ka holomua ʻepekema no ka heluna nui loa, a no nā maʻi genetic a me nā maʻi maʻamau. ʻO ka waihona kālā makahiki i hāʻawi ʻia i ke kōkua ʻana a me ke kākoʻo ʻana i nā maʻi a me nā ʻohana i manaʻo ʻia ma 35 miliona euros. ʻO nā mea āpau, kokoke i 25 mau lawelawe kūloko i wehe ʻia a hilinaʻi pololei lākou i nā kālā Telethon. Mahalo i nā haʻawina, hiki ke hoʻolako kālā i kekahi mau pono o nā ʻohana e like me ka noho huila a i ʻole ke komo ʻana no ka poʻe kīnā i ke ola o kēlā me kēia lā.

ʻO kekahi waiwai nui, ke kūkulu ʻana i ʻelua mau kauhale "Hoʻomaha ʻohana". ma Palani, kahi e hiki ai i ka poe malama ohana ke hanu. ʻO ka nui, ʻewalu mau hale i wehe ʻia ma Anger a me 18 i ka Jura. Ma Palika, ʻo nā kālā i hōʻiliʻili ʻia i hiki ke wehe i nā keʻena hoʻokipa a me nā kahua kelepona.

He aha nā hanana o kēia puke hou?

hookolokoloia : I keia makahiki, ʻO Garou ke kākoʻo o ka hana i hoʻonohonoho ʻia ma Paris, ola mai ka Champs de Mars, a ma ka manawa like ma nā kīwī TV Television a Farani a puni. ʻO kekahi hanana nui, Pōʻalima Dekemaba 5: ʻO ka Grand Relais, mai Méribel a i ka hale kiaʻi ʻo Eiffel, nā poʻokela o ka pôpeku, biathlon, nā pāʻani Paralympic… No kēlā me kēia iho, e uku ʻia ʻo 1 euro i ka Telethon. ʻO ka hope, e noho mai ka ʻĀkau o Farani i kēia manawa, ʻO ke ala o nā Pilikua e hui pū me kahi kaʻa kaʻahele, ʻO nā kāmela ʻo France Télévisions ma luna o ka moku, e haʻalele iā Coudekerque-Branche ma ka ʻĀkau a hiki i Paris i ka Pōʻaono 6 Dekemaba ma 18 pm ʻO ka pahuhopu e hōʻiliʻili hou i ka 30 miliona euros o nā haʻawina e like me ka makahiki i hala.