{"id":4781,"date":"2013-09-12T12:41:57","date_gmt":"2013-09-12T10:41:57","guid":{"rendered":"https:\/\/www.institut-biotherapies.fr\/?p=4781"},"modified":"2013-09-12T12:41:57","modified_gmt":"2013-09-12T10:41:57","slug":"telethon-2013-5-families-5-stories-5-fights-against-muscle-disease","status":"publish","type":"post","link":"https:\/\/www.institut-biotherapies.fr\/en\/2013\/09\/12\/telethon-2013-5-families-5-stories-5-fights-against-muscle-disease\/","title":{"rendered":"Telethon 2013: 5 families, 5 stories, 5 fights against muscle disease"},"content":{"rendered":"

On December 6th<\/sup> and 7th<\/sup>, together with Patrick Bruel, the official ambassador of Telethon 2013, five families will represent the fight of the AFM-Telethon. Sandrine, Luke, Vanessa, Emmanuelle and Geraldine and their children live throughout France. Despite different family situations and histories, they all have one thing in common: the fight against the disease that affects their child.<\/p>\n

Sandrine<\/b> is a single mother raising her two girls, ages 6 and 4. The eldest, Emma<\/b>, was diagnosed with laminopathy. Sandrine can count on Annie, her daughters\u2019 paternal grandmother. \u201cWe each have our own way of managing the disease, Annie, my mum and myself. But I can always count on them.\u201d<\/p>\n

Luke and Vanessa<\/b> have been fighting for three years against spinal muscular atrophy, which paralyses the life of their son Thibault<\/b>, age 5. \u201cThibault is a joyful little boy, happy to live, in constant intellectual movement. That motivates us every minute. We don\u2019t question whether this situation is difficult to live. We\u2019re all a bit affected by the disease and try to fight together.\u201d<\/p>\n

Vanessa<\/b> is the mother of Lucas<\/b>, 6 years old and suffering from Emery- Dreifuss muscular dystrophy. In his family, he is not alone in fighting the disease. Seven other members are affected. \u201cSometimes Lucas is full of life, there are days when we forget the disease. Then there are days when he\u2019s in a lot of pain. When I see him happy and fighting, it makes me want to fight against the disease. Research gives me a lot of hope. We are fighting, we will continue to fight, and I think that we will succeed.”<\/p>\n

Emmanuelle<\/b> is the mother of Gwena\u00ebl<\/b>, 14 years old and suffering from mitochondrial myopathy. This myopathy affects the energy-producing structures found in all cells of the body. Her vital forces are quickly depleted, forcing her to rest for long periods to preserve her 12 to 15 hours of weekly activity. \u201cMy hope is Gwena\u00ebl … She has such strength. It\u2019s very ironic because even though she has no energy due to her illness, she has tremendous psychological energy.\u201d<\/p>\n

Geraldine<\/b> is a determined mother. Unable to have children, she and her husband decided to go to Thailand to adopt their little boy: Lee<\/b>, 8 years old. On their return, thalassemia, which was declared as minor in Thailand, proved to be major.\u00a0 One evening in September 2010, Geraldine\u2019s life changed dramatically again: \u201cA report highlighted a world premiere where a young boy, also from Thailand and also suffering from thalassemia major, had regained a normal life thanks to gene therapy. That evening, my life changed. For me, gene therapy will cure my son, I am convinced.\u201d<\/p>\n","protected":false},"excerpt":{"rendered":"

On December 6th and 7th, together with Patrick Bruel, the official ambassador of Telethon 2013, five families will represent the fight of the AFM-Telethon. Sandrine, Luke, Vanessa, Emmanuelle and Geraldine and their children live throughout France. Despite different family situations and histories, they all have one thing in common: the fight against the disease that … [Read more]<\/a><\/p>\n","protected":false},"author":3,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[3],"tags":[],"class_list":["post-4781","post","type-post","status-publish","format-standard","hentry","category-news"],"_links":{"self":[{"href":"https:\/\/www.institut-biotherapies.fr\/en\/wp-json\/wp\/v2\/posts\/4781","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.institut-biotherapies.fr\/en\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.institut-biotherapies.fr\/en\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.institut-biotherapies.fr\/en\/wp-json\/wp\/v2\/users\/3"}],"replies":[{"embeddable":true,"href":"https:\/\/www.institut-biotherapies.fr\/en\/wp-json\/wp\/v2\/comments?post=4781"}],"version-history":[{"count":1,"href":"https:\/\/www.institut-biotherapies.fr\/en\/wp-json\/wp\/v2\/posts\/4781\/revisions"}],"predecessor-version":[{"id":4782,"href":"https:\/\/www.institut-biotherapies.fr\/en\/wp-json\/wp\/v2\/posts\/4781\/revisions\/4782"}],"wp:attachment":[{"href":"https:\/\/www.institut-biotherapies.fr\/en\/wp-json\/wp\/v2\/media?parent=4781"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.institut-biotherapies.fr\/en\/wp-json\/wp\/v2\/categories?post=4781"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.institut-biotherapies.fr\/en\/wp-json\/wp\/v2\/tags?post=4781"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}