{"id":6809,"date":"2018-05-18T11:18:06","date_gmt":"2018-05-18T11:18:06","guid":{"rendered":"https:\/\/laforcedmd.com\/?p=6809"},"modified":"2022-05-03T18:16:19","modified_gmt":"2022-05-03T18:16:19","slug":"portrait-of-duchenne-for-the-love-of-his-brother","status":"publish","type":"post","link":"https:\/\/laforcedmd.com\/en\/portrait-of-duchenne-for-the-love-of-his-brother\/","title":{"rendered":"Portrait of Duchenne &#8211; For the love of his brother!"},"content":{"rendered":"<p><strong>What\u2019s it like to live with DMD? As a parent, to face the reality that your child has a fatal disease? As a person with DMD, to face an inevitable, premature death in your twenties? As a sibling, relative or friend, to face mourning your loss?<\/strong><\/p>\n<p><strong>The journey is beyond words.<\/strong><\/p>\n<p><strong>Our Web short documentary series, \u201cPortrait of Duchenne Canada\u201d, will present the experiences of families and children with DMD. You will meet five Canadian families who are taking on the challenges of raising money and leading the way in advocating for access to new treatments. Today, more than ever, it\u2019s time to share their stories. New treatments are on the horizon and families need to be heard to advocate for ways to access them quickly.<\/strong><\/p>\n<h3>SAMUEL &amp; GUILLAUME<\/h3>\n<h4>Dream of a robotic arm becomes real, too late\u2026<\/h4>\n<p>Samuel Fleurant-Beauchemin\u2019s brother Guillaume had DMD. Guillaume was gradually losing the use of his arms. One day, Samuel came to visit his brother with a sparkle in his eyes. He had just seen a\u00a0<strong>JACO robotic arm<\/strong>. He believed that the wheelchair-mounted device would restore Guillaume\u2019s independence. Samuel decided to get his brother the robotic arm at all costs! He would start a non-profit organization to raise funds. He would quickly succeed in his task. And he did. But on the day that the arm was installed, destiny struck. Guillaume was admitted to the hospital, where he passed away shortly afterwards. Despite this ordeal, Samuel decided to continue to give back. Today, he runs an organization called\u00a0<strong>A bridge to autonomy<\/strong>. To date, they have given 20 robotic arms to children with DMD in Quebec.<\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n<p><iframe loading=\"lazy\" title=\"Portrait of Duchenne Canada Samuel et Guillaume\" width=\"1140\" height=\"641\" src=\"https:\/\/www.youtube.com\/embed\/d_xeJqfDTxQ?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture\" allowfullscreen><\/iframe><\/p>\n<p>&nbsp;<\/p>\n<h3>Quotes from the video<\/h3>\n<p>&nbsp;<\/p>\n<h4>Mourning with his brother<\/h4>\n<blockquote><p><strong>Samuel Fleurent-Beauchemin:<\/strong><em>\u201cTo me, what has been the hardest was to live with the bereavements of my brother, who should no longer be able to do such and such.\u201d<\/em><\/p><\/blockquote>\n<p>&nbsp;<\/p>\n<blockquote><p><strong>Samuel Fleurent-Beauchemin:\u00a0<\/strong><em>\u201cI was a bit angry with life, to make him suffer and to make us go through all of this.\u201d<\/em><\/p><\/blockquote>\n<p>&nbsp;<\/p>\n<blockquote><p><strong>Samuel Fleurent-Beauchemin:<\/strong><em>\u201cI think for him, as a human being who has already had his autonomy, I think the biggest challenge is to understand that you once have done it, but no more today.\u201d<\/em><\/p><\/blockquote>\n<p>&nbsp;<\/p>\n<h4>When the arm was installed, he went to emergency, never to return<\/h4>\n<blockquote><p><strong>Samuel Fleurent-Beauchemin:<\/strong>\u201cOn January 24th, Guillaume\u2019s arm was installed. He had just been officially installed and, that day, he went to the emergency.\u201d<\/p><\/blockquote>\n<p>&nbsp;<\/p>\n<blockquote><p><strong>Samuel Fleurent-Beauchemin:\u00a0<\/strong><em>\u201cWe have created a foundation to help others. We help people by providing them with technical assistance and tools that are complementary to what the government offers. Currently, it involves the gift of robotic arms.\u201d<\/em><\/p><\/blockquote>\n<p>&nbsp;<\/p>\n<h4>Paying forward in memory of his brother<\/h4>\n<blockquote><p><strong>Samuel Fleurent-Beauchemin:\u00a0<\/strong><em>\u201cWhat my brother has brought me in life continues to grow on me. It is the project that he inspired in me; it is a project that represents him. It\u2019s always inside me and it\u2019s always growing. When you are in mourning, you really must focus on the person you have become, because of these past ones. Without this person, we would not have become who we are. I am glad because he\u2019s still making me grow.\u201d<\/em><\/p><\/blockquote>\n<p>&nbsp;<\/p>\n<h3>Join the fight!<\/h3>\n<p>Duchenne muscular dystrophy (DMD) is a rare disease with no cure. Orphan drugs that target its causes are being developed now. But we need your help. Research is the only hope. And research requires funding.<\/p>\n<p>For the past 20 years, Canadian families in the DMD community have been raising funds for and awareness of DMD. Their actions and successes have funded current research. Now that new treatments are emerging, families need to unite and be heard to access new treatments quickly.<\/p>\n<p>&nbsp;<\/p>\n<h5>Bruce Babington, our own La Force athlete, will cycle across Canada in July 2018 to raise funds and awareness for DMD. Our part is to tell their story.<\/h5>\n<p>&nbsp;<\/p>\n<h3>Sharing these stories is one step forward towards the cure<\/h3>\n<ul>\n<li>We invite you to share this story with your community.<\/li>\n<li>Make a donation to our organization, so we can continue to help get closer to treatment.\u00a0Donate\u00a0<a href=\"http:\/\/fondationpva.com\/en\/\" rel=\"noopener\">\/<\/a><a href=\"\/?page_id=3528\" rel=\"noopener\">\u00a0here<\/a><\/li>\n<\/ul>\n<p>&nbsp;<\/p>\n<h4>For more information:<\/h4>\n<p>About Samuel\u2019s organization: Un pont vers l\u2019autonomie\u00a0<a href=\"http:\/\/fondationpva.com\/en\/\" rel=\"noopener\">\/<\/a><a href=\"http:\/\/fondationpva.com\/en\/\" rel=\"noopener\">\u00a0here<\/a><\/p>\n<p>About Kinova\u2019s JACO robotic arm: Kinova\u00a0<a href=\"http:\/\/www.kinovarobotics.com\/assistive-robotics\/products\/robot-arms\/\" rel=\"noopener\">\/<\/a>\u00a0<a href=\"http:\/\/www.kinovarobotics.com\/\" rel=\"noopener\">here<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>What\u2019s it like to live with DMD? As a parent, to face the reality that your child has a fatal disease? As a person with DMD, to face an inevitable, premature death in your twenties? As a sibling, relative or friend, to face mourning your loss? The journey is beyond words. Our Web short documentary [&hellip;]<\/p>\n","protected":false},"author":2,"featured_media":6814,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[20],"tags":[],"class_list":["post-6809","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-testimonial"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.0 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Portrait of Duchenne - For the love of his brother! - La Force dmd<\/title>\n<meta name=\"description\" content=\"When his brother Guillaume loses his autonomy due to DMD, Samuel decides to get the robotic arm of his dreams at any cost!\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/laforcedmd.com\/en\/portrait-of-duchenne-for-the-love-of-his-brother\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Portrait of Duchenne - For the love of his brother! 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