{"id":9242,"date":"2019-11-05T14:47:02","date_gmt":"2019-11-05T14:47:02","guid":{"rendered":"https:\/\/laforcedmd.com\/?p=9242"},"modified":"2022-05-03T18:09:02","modified_gmt":"2022-05-03T18:09:02","slug":"living-with-dmd-carls-resilience","status":"publish","type":"post","link":"https:\/\/laforcedmd.com\/en\/living-with-dmd-carls-resilience\/","title":{"rendered":"Living with DMD, Carl’s resilience"},"content":{"rendered":"

Notes from the \u201cLiving with DMD\u201d web-doc Tecima Productions team. Carl’s resilience.<\/em><\/p>\n

Our small production team travelled across Canada, meeting with families whose children have Duchenne muscular dystrophy (DMD). We met with Dakota (age 6), Anakin (age 11) and Carl (age 35) at critical moments in their journey. Our goal was to produce a Web-doc in three acts, to raise awareness about DMD by living it through the eyes of the families suffering because of it. This degenerative muscle disease, for which there is no cure, usually leads to premature death in the patient\u2019s early twenties … But, guess what? … this isn\u2019t always the case, because Carl Marier has defied all odds and is now aged 35. When we met him we were overwhelmed by his joyfulness, his presence, and his sense of humour, even if he is the youngest person living in a residence for the elderly. Living with DMD: Carl’s resilience story.<\/strong><\/p>\n

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Surviving 3 major operations<\/h4>\n

Today, Carl is connected to his respirator 24\/7; the respirator sends the air directly to the lungs, a tracheotomy<\/a><\/span> allows him to limit the colds that could turn into pneumonia and his gastrostomy<\/a><\/span> helps him to eat. As he grew older, it was harder and harder for his family to care for him until it became impossible as he needed to cared for day and night. Because of a lack of adapted facilities, their only option was to send him into a residence for the elderly.<\/p>\n

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Alain Marier, from the documentary\u00a0 Living with DMD<\/em><\/strong>– ” We had to place Carl, who is 34 years old, in a residence for seniors. I\u2019ll tell you, almost three-quarters of the seniors there do not know where they are. They have Alzheimer’s or dementia. He\u2019s the baby in the place because he\u2019s the youngest.”<\/p><\/blockquote>\n

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The power of a positive attitude<\/h4>\n

When we asked him what quality he developed because of DMD, Carl immediately answered “resilience”. He greeted us in his room with a great amount of energy and punctuated our visit with several jokes. He also told us he has many friends and he loves to socialize with them in the residence. We also witnessed a tender relationship between him and his step-mother, Sonia G\u00e9lineau.<\/p>\n

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Sonia G\u00e9lineau – from the documentary Living with DMD\u2013 <\/em><\/strong>“Carl came into my life when he was nine-and-a-half years old. Later, in 2001, his father and I were married. Living with the disease is not always easy”.<\/p><\/blockquote>\n

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Faced with a great deal of suffering and inevitable destiny, what we witnessed from our encounter with Carl was how the strength of character, a solid positive attitude, and unfailing love link together in the face of adversity that is difficult to imagine.<\/strong><\/p>\n

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Enjoy the web-doc. Thank you for sharing.<\/h4>\n

Dakota’s big smile<\/a> –\u00a0<\/span>A race against time to access new treatments<\/a><\/span><\/p>\n