{"id":5841,"date":"2021-04-09T21:57:12","date_gmt":"2021-04-09T21:57:12","guid":{"rendered":"https:\/\/www.ptcbio.com\/?p=5841"},"modified":"2024-12-05T15:00:52","modified_gmt":"2024-12-05T20:00:52","slug":"lessons-learned-from-my-sibling-with-duchenne-duchennecan","status":"publish","type":"post","link":"https:\/\/www.ptcbio.com\/posts\/lessons-learned-from-my-sibling-with-duchenne-duchennecan\/","title":{"rendered":"Lessons Learned from My Sibling with Duchenne"},"content":{"rendered":"\n<p class=\"core-block core-paragraph\"><span style=\"color: #000080\"><em>Emily is a contributing writer. Her brother Wil has Duchenne muscular dystrophy.<\/em><\/span><\/p>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\" \/>\n\n\n\n<figure class=\"wp-block-image\"><img decoding=\"async\" src=\"https:\/\/admin.ptcbio.com\/en\/wp-content\/uploads\/sites\/3\/2021\/04\/Emily-and-Wil-Cook-DuchenneCan.jpg\" alt=\"Emily and Wil Cook\" class=\"wp-image-5842\" \/><\/figure>\n\n\n\n<p class=\"core-block core-paragraph\"><\/p>\n\n\n\n<p class=\"core-block core-paragraph\">He was always noticed on the field when growing up; that is, for all the \u201cwrong\u201d reasons. Other kids could outrun him, outjump him, and outperform him. And yet, despite his physical weaknesses, he was also noticed for the \u201cright\u201d reasons. His heart and attitude were always the strongest on the team.<\/p>\n\n\n\n<p class=\"core-block core-paragraph\">And then came the \u201cwhy to the wrong.\u201d In September of 2007, my brother, Wil, was diagnosed with <a href=\"https:\/\/www.ptcbio.com\/our-science\/therapeutic-areas\/about-duchenne-muscular-dystrophy\/\">Duchenne muscular dystrophy<\/a> \u2013 a rare genetic disorder caused by a mutation in the dystrophin gene. It causes muscular deterioration over time. At the time of his diagnosis, my family had no idea what this meant for Wil\u2019s future.<\/p>\n\n\n\n<p class=\"core-block core-paragraph\">After visiting doctors around the country, we discovered a cure had not been found for my older brother, or others with Duchenne. As Duchenne progressed, I watched him struggle to even get up from a chair or to walk \u201cnormally.\u201d However, waddling on his tiptoes like a penguin with his entire face a smile, he was never hindered from doing what a seven-year-old boy should: aggravate his little sister.<\/p>\n\n\n\n<p class=\"core-block core-paragraph\">Because Wil had an incredibly positive view on his life and of himself, it was not until a wheelchair became his source of mobility that I grasped the magnitude and pace of his decline. Ironically, this left my joy, not his, in decline.<\/p>\n\n\n\n<p class=\"core-block core-paragraph\">He began to find ways to cure MY sadness, even as he struggled to move or, occasionally, to breathe easily. But he found a cure for me: inviting our boxer, Bama, to join the family, and Bama proved to be a prayer answered. As Bama jumped and ran in ways Wil never could or (likely) ever will, we both began to laugh real laughs. As he bounced between our laps and from sofa to wheelchair, we both anticipated his unconditional love and enthusiastic licks.<\/p>\n\n\n\n<p class=\"core-block core-paragraph\">That Bama could change tragedy to joy is both remarkable and also noticeable for all the \u201cright\u201d reasons. I was in awe of Bama\u2019s impact on our lives by giving Wil and me a joy to share that renders powerless Duchenne\u2019s ability to kidnap all hope.<\/p>\n\n\n\n<p class=\"core-block core-paragraph\">Wil\u2019s love of life multiplied as the Make-a-Wish Foundation provided him a chance to experience the magic of Fenway Park and his beloved Red Sox in person. After seeing his excitement in the stands as his favorite player hit multiple home runs, I knew I wanted even more of what Wil has \u2013 an overpowering ability to find happiness and gratitude in any circumstance.<\/p>\n\n\n\n<div  class=\"quote-block  color-theme--white\">\n\n\t\n\t<div class=\"quote-block__content\">\n\t\t<blockquote class=\"quote-block__text color-theme-border--white\">\n\t\t\t<div class=\"quote-block__heading heading--4\">\n\t\t\t\tIf I were to choose the most important lesson I have learned from Wil, it would be to focus on the good.\t\t\t<\/div>\n\t\t<\/blockquote>\n\n\t\t\n\t\t\t<\/div>\n\n<\/div>\n\n\n\n\n<p class=\"core-block core-paragraph\">I can genuinely say, throughout his 20 years of life, Wil has not once complained about his situation. I am inspired and emboldened by his strength to live every day to its fullest and see it as a blessing. I aspire to have the strength and heart of my brother. I would be honored to one day be noticed for those \u201cright\u201d reasons Wil is noticed.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Emily shares the lessons learned from her brother, who lives with Duchenne.<\/p>\n","protected":false},"author":1,"featured_media":16274,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[19,60],"tags":[],"media-type":[5],"therapeutic-area":[21],"class_list":["post-5841","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-rare-disease-community","category-rare-journeys"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v27.5 (Yoast SEO v27.5) - https:\/\/yoast.com\/product\/yoast-seo-premium-wordpress\/ -->\n<title>Lessons Learned from My Sibling with Duchenne - PTC Therapeutics (United States)<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.ptcbio.com\/posts\/lessons-learned-from-my-sibling-with-duchenne-duchennecan\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Lessons Learned from My Sibling with Duchenne\" \/>\n<meta property=\"og:description\" content=\"Emily shares the lessons learned from her brother, who lives with Duchenne.\" \/>\n<meta property=\"og:url\" content=\"https:\/\/www.ptcbio.com\/posts\/lessons-learned-from-my-sibling-with-duchenne-duchennecan\/\" \/>\n<meta property=\"og:site_name\" content=\"PTC Therapeutics (United States)\" \/>\n<meta property=\"article:publisher\" content=\"https:\/\/www.facebook.com\/PTCTherapeutics\" \/>\n<meta property=\"article:published_time\" content=\"2021-04-09T21:57:12+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2024-12-05T20:00:52+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/www.ptcbio.com\/wp-content\/uploads\/sites\/2\/2024\/09\/Emily-Will-DMD.png\" \/>\n\t<meta property=\"og:image:width\" content=\"466\" \/>\n\t<meta property=\"og:image:height\" content=\"262\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/png\" \/>\n<meta name=\"author\" content=\"mindgrub\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:creator\" content=\"@PTCBio\" \/>\n<meta name=\"twitter:site\" content=\"@PTCBio\" \/>\n<meta name=\"twitter:label1\" content=\"Written by\" \/>\n\t<meta name=\"twitter:data1\" content=\"mindgrub\" \/>\n\t<meta name=\"twitter:label2\" content=\"Est. reading time\" \/>\n\t<meta name=\"twitter:data2\" content=\"3 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\\\/\\\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\\\/\\\/www.ptcbio.com\\\/posts\\\/lessons-learned-from-my-sibling-with-duchenne-duchennecan\\\/#article\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/www.ptcbio.com\\\/posts\\\/lessons-learned-from-my-sibling-with-duchenne-duchennecan\\\/\"},\"author\":{\"name\":\"mindgrub\",\"@id\":\"https:\\\/\\\/www.ptcbio.com\\\/#\\\/schema\\\/person\\\/ad620984ffa95aa1ade6802572186b80\"},\"headline\":\"Lessons Learned from My Sibling with Duchenne\",\"datePublished\":\"2021-04-09T21:57:12+00:00\",\"dateModified\":\"2024-12-05T20:00:52+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\\\/\\\/www.ptcbio.com\\\/posts\\\/lessons-learned-from-my-sibling-with-duchenne-duchennecan\\\/\"},\"wordCount\":500,\"publisher\":{\"@id\":\"https:\\\/\\\/www.ptcbio.com\\\/#organization\"},\"image\":{\"@id\":\"https:\\\/\\\/www.ptcbio.com\\\/posts\\\/lessons-learned-from-my-sibling-with-duchenne-duchennecan\\\/#primaryimage\"},\"thumbnailUrl\":\"https:\\\/\\\/www.ptcbio.com\\\/wp-content\\\/uploads\\\/sites\\\/2\\\/2024\\\/09\\\/Emily-Will-DMD.png\",\"articleSection\":[\"Rare Disease Community\",\"Rare Journeys\"],\"inLanguage\":\"en-US\"},{\"@type\":\"WebPage\",\"@id\":\"https:\\\/\\\/www.ptcbio.com\\\/posts\\\/lessons-learned-from-my-sibling-with-duchenne-duchennecan\\\/\",\"url\":\"https:\\\/\\\/www.ptcbio.com\\\/posts\\\/lessons-learned-from-my-sibling-with-duchenne-duchennecan\\\/\",\"name\":\"Lessons Learned from My Sibling with Duchenne - 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