Telethon 2014: Yaƙin iyalai a cikin Haske

Tattaunawa da Laurence Tiennot-Herment, shugaban AFM-Téléthon

A lokacin Telethon 2014, Laurence Tiennot-Herment yana amsa tambayoyinmu.

A karshen mako ne za a yi bugu na 28 na Telethon, menene taken sabon yakin?

Laurence Tiennot-Herment: wannan sabon bugu ya jaddada akan gwagwarmayar yau da kullun na iyalai da yaran da cutar da ba kasafai ta shafa ba. A bana, iyalan jakada hudu ne ke kan gaba, kuma ta hanyar su, cututtuka hudu da ba kasafai ake nunawa jama'a ba.

Za mu ba da labarin Juliette, 'yar shekara 2, tana fama da anemia Fanconi, Cutar da ba kasafai ba wacce ke da haɗarin kamuwa da cutar sankarar bargo da ciwon daji sau 5 fiye da na mutum mai lafiya. Wannan zai zama damar da za a yi magana game da ganewar asali da duk abin da ya faru kafin wannan sanarwa ga iyali.

Za ku gano Lubin, mai shekaru 7, yana fama da ciwon tsoka na kashin baya, mai raɗaɗi da ci gaba da cutar neuromuscular. wanda ke haifar da atrophy na tsoka. AFM za ta bayyana musamman yadda gudummawar Telethon ke sauƙaƙawa da tallafawa matsalolin yau da kullun na iyali.

To Ilan, mai shekaru 3, wani abu kuma. Yana da cutar Sanfilippo, cuta mai saurin kamuwa da tsarin juyayi na tsakiya. A hankali zai iya rasa tafiya, tsabta da magana idan ba a kula ba. A cikin wannan takamaiman yanayin, ba kasafai ba, maganin kwayoyin halitta shine kawai mafita. AFM ta taimaka wajen bincike tare da gudummawar Yuro miliyan 7, kuma a karon farko, a ranar 15 ga Oktoba, 2013, Ilan ya sami damar amfana daga jiyya na jiyya. Wannan shine farkon gwajin nau'in kwayar halitta a cikin yaro.

Last amma ba ko kadan, Mouna, wacce ke da shekaru 25 a yanzu, tana da matsalar hangen nesa, Leber's Amaurosis. Filin hangen nesansa yana da kunkuntar sosai. Taimako na Telethon ya ba da damar, sake, don ba da kuɗin gwajin maganin kwayoyin halitta wanda Mouna ya shiga a Asibitin Jami'ar Nantes.

Menene kimar ku na shekarar da ta gabata?

LTH : Sakamakon shekara yana da kyau sosai. Akwai ƙarin gwaje-gwaje a cikin jiyya a cikin ɗan adam. Fata gaskiya ne. A cikin 2014, za mu yi bikin shekaru 15 na nasarar aikin jiyya da aka haɓaka godiya ga Telethon. An yiwa yara da dama jinya da wannan maganin, kuma suna nan lafiya. Hakanan babban bege ne ga binciken likita.

Ana karɓar kusan Yuro miliyan 100 kowace shekara yayin Telethon. Ta yaya ake amfani da wannan kuɗin don taimakon iyalai?

LTH : Da farko dai, AFM Telethon ya sa ya yiwu asusu da kuma hanzarta bincike da sanya suna kan daruruwan cututtuka da ba kasafai ba. Ci gaban kimiyya yana da fa'ida ga adadi mafi girma, da kuma cututtukan ƙwayoyin cuta kamar cututtukan gaba ɗaya. An kiyasta kasafin kudin shekara-shekara don taimakawa da tallafawa marasa lafiya da iyalai a kan Yuro miliyan 35. Gabaɗaya, kusan sabis na yanki 25 an buɗe kuma sun dogara kai tsaye akan kuɗin Telethon. Godiya ga gudummawar, yana yiwuwa a zahiri ba da kuɗin wasu buƙatun iyalai kamar keken hannu ko samun dama ga nakasassu a rayuwar yau da kullun.

Wani muhimmin jari, gina ƙauyukan "Family Respite" guda biyu a Faransa, wanda ke ba wa masu kula da iyali damar numfashi. Gabaɗaya, an buɗe masauki takwas a cikin fushi da 18 a cikin Jura. A birnin Paris, kudaden da aka tara sun ba da damar bude ofisoshin karbar baki da kuma dandalin tarho.

Menene abubuwan da suka faru na wannan sabon bugu?

fitina : Wannan shekara, Garou ne ya dauki nauyin gudanar da aikin da aka shirya a Paris, kai tsaye daga Champs de Mars, kuma a lokaci guda akan tashoshi na TV na Faransa da kuma a duk faɗin Faransa. Wani babban taron, Jumma'a Disamba 5: Babban Relais, daga Méribel zuwa Hasumiyar Eiffel, zakaran kwallon kafa, biathlon, wasannin nakasassu… Ga kowane zuriya, euro 1 za a biya ga Telethon. A ƙarshe, zauna daga Arewacin Faransa wannan lokacin, Hanyar Kattai za ta haɗu da ayarin tafiya. Kamfanin na France Televisions kyamarori a cikin jirgin, wanda zai bar Coudekerque-Branche a Arewa kuma wanda zai isa birnin Paris a ranar Asabar 6 ga Disamba da karfe 18 na yamma Manufar ita ce ta sake tattara Euro miliyan 30 na gudummawa kamar bara.