{"id":6952,"date":"2025-02-18T06:13:21","date_gmt":"2025-02-18T06:13:21","guid":{"rendered":"https:\/\/site.itshrt.com\/worldnews\/minneapolis-parents-share-journey-of-having-two-sons-with-rare-muscle-wasting-disorder-2\/"},"modified":"2025-02-18T06:13:21","modified_gmt":"2025-02-18T06:13:21","slug":"minneapolis-parents-share-journey-of-having-two-sons-with-rare-muscle-wasting-disorder-2","status":"publish","type":"post","link":"https:\/\/site.itshrt.com\/worldnews\/minneapolis-parents-share-journey-of-having-two-sons-with-rare-muscle-wasting-disorder-2\/","title":{"rendered":"Minneapolis parents share journey of having two sons with rare muscle-wasting disorder"},"content":{"rendered":"<p> <script async src=\"https:\/\/pagead2.googlesyndication.com\/pagead\/js\/adsbygoogle.js?client=ca-pub-6606220950177433\"\r\n     crossorigin=\"anonymous\"><\/script>\r\n<!-- ItShrt World News -->\r\n<ins class=\"adsbygoogle\"\r\n     style=\"display:block\"\r\n     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data-src=\"https:\/\/www.cbsnews.com\/embed\/video\/?v=f303dc12868a012283443d8b9123e5fe1739858303&amp;usprivacy=null#xVj7b9s4Ev5XDAHrHy5hLFFvL4w9x066wbVJ0NceEBcGRVK2NnqdKNlxU%2F%2FvN0PJr2zR2%2Bt1cdtFJA2HwyH5zcw3fjZYUxdlyjbG0KirRhrnRqImRZqyUiVRKo1hzFIlzw0hVwmHT3hRjzAFFFeJkIUxfDaSWmbKGD48G%2FWmRJ1VIdCQgNfQ4lLQOCQRZZw4kkoSco%2BTkDl%2BFPq%2B79o%2B6Gbl01sZ3%2BCM%2BeXHN7y0Fq8uCzW%2BWdpjmfKQTa7oP8N%2F%2FXaznIN2USWLJL8SSZ0UOUzJkhykKm0W7UcuWVmkiSIlq2ReK1LERBW5IuukXpIKhIQXeTudMLEqOKsliYuK8KbCM6iTGvduvDnY6nW2ekXcQ1s9tNVDW73O1sXFhYEH9QgT4SVu0vS77BR5b%2BdTD3zqdT5xlhd5wln6%2FgcarZNMqpplpTG0fDv0qWPq%2F2AfTcXa46U0PHy%2BZpFMYXHTHjohGEjb7xw2CzeesYVUCAmFN7ms61INZ4PZgCkla0UveKRyuVawYp3wC15ks8GyiWaDZDaoZgNqUnc2MOlsYHkwh1lhFHkhkTFlxIkkI1HkuMRyaOAHnvAZ82eDetlkUc6SdDbwHPPJ9kyYyR1h2dQNXB5I6luMUjP2HWm63IndCOzHXigixtzYiYM4DkzqSScU0g5MYcmYxRe%2Fl4tfVqPYNm3BLRp4ATMtSgPbcWwRRKFFbenGeIDL%2F8NGwSHzyaew09gNqBnEroQoi9zYc1zKA0FDHoW2FJH343a6PTfKCnKAXH%2Bo0pMtl1UhLiDidTrYbbzdcvcxG6xg08sUXmzXobYZzPVHxlQtq4vMboJDOvmrLNO%2FxDSEUsZqMM3KMoXgxBCZDZ5IVsrFh7evQaN5cVzr9fp0PZ2vVFEzWBG96ST%2FSwabDXQev8nKAp3dJ3HI2wnXGRtRC2hxnEDEJHDjgDg2dwjz3IgwhhCwQje2%2BCGtat%2FImvOCOAS9R%2FAnElzhS6geD939dafdQ8We09OKnwA7ehvvcf1blmH2%2Btip721cbtqRh%2F3Qb5PJHdi47WywNP3DOicOfQKQyjJRhQAzFngumdL1wcJtyEUGLrQDTQlgVmp%2FMGB6zDlILtOCP%2B7TmfqgZPWuiRSvkkiKvboq4SqKaqe3lE%2FjKQRTkyISzHP4Z2jp5UFqh%2BeOe%2B5iymQCryBet3%2FnaZI%2FniDEj03fv1hdxOusyi5yWUOKELPBAgL%2FF64SMXqGPAsT8X3bZypfj1xq2pbV5wxH8e%2B2H6dsMfqJXrKMR%2FCQGa%2FgIepKwEOldakfegwqOz7iiOmxTc7hkTd6ApN10s9kXY0sk9r9w1oQQXH3%2FpM9flUUi1ROxzeTd%2BOb%2BW3x8X58M%2B2XqyofPbwd307v3nzqw4mXo1XGSgvXhDBy%2BurI%2BVV5rLyCgjMyf57DPhXwi3kJlWX0DFE2x82hOE8kXEY%2Bb2Wje3NiTmx%2FPCXUnDjEubr2yfiauuTy6nJyaXnT68C96q8WDR6Rfmz76vPoGcmPrGCRz3LbX0K8jPRNwJ5%2Botfw%2F4t47ZfIcWAaPlpHHuVmvi4qoUbPOsC2%2FZYsjZ7b57YPa9SYKUZrGekpiZqDCC5SP1szjZqXVbJifAPW25dtf1GWo2f4M1d1leQLLZhrDHQvIElWcG6v7u5evb6a39y%2Be%2F%2F2avxm%2FvFmenU3v727nVx96j%2FHGRhnFcvU9mdDRyPLdJ1GDAH4jhGFCIVrMYbtvSDxaHU0rjDnAbLg%2BwyRdYa4OkNUnSGmzhBRZ4inM0TTGWLpDJF0hjhCngdIghAEKJ0bx2sgmsBm%2Bzn8KprQb8ATaO1AAhLEFCYnRNWZxhSG%2Bon7iKvTSYgtYwgc5wRduMUOX0Y7dIowGP9TGMMFEF5or8UZuvQZP4%2BxhhkC0Pat2oA77hh1h7fOsT3icKTFnHFE0Xe4w%2Fkd8kAK2Oumt6jT197ir5MfEKhX7DAIg4A1lBzhsBXOO%2FTssIhSQCOe9rfwqMnEwbFdR7EFcV0x%2FggLaGwWmeIF0FR8h%2FJtm6ZrBh4A0oFZk8t3t4dz4h6I%2FobpGD5yBW7O9Y12hQokrJwz9Ox2NhjvdTiewopb1l6ib%2BTYNnq1aPscXjQ5bB8Z7gPUoygFX6FG120d2GLBuIaXq10J6qpF1jzdV0Upq3rzD4lHSx1fCuZ6tuULy3VCB1mWzWzP2H7SIcI0hYazqOVig%2B8gWxaipRkyF9qpri7HktVQ8gUWftDHxqvDDHgPdQpr3qGhweAuE3jZk42nJdAcDh2f5C152U8D8vjCNvCKF3eUqKucQZ8ouirLKuC7qRw34G%2BF7dyDYVtu6NvUIZ7tUuJ4HiMBcwJi%2B9L3bSC3zBa6vB9P3VGBSFay7qUSHDrS0X2iiLgZxSIgFuNgN%2FZjAhQ4IjELTMdxROAE8uDRfRNNYQt4%2BkC%2BiUmJ5fWsYEjDto85WR3j6njl%2FfA7iayLVZu93sPBK%2BxHX8p2vVr2lV5NLbE%2F%2B71oqlxusHNbshUca69eFy%2BbuKxRYIysIcGhhgCAVQKI3WGd3ZXnNdied9J9UuiGD717oqZyhYehq8Fip4DhMsd2HlMWPA8tdqM60a8JEsoHA4gSS%2Ff8DkfetQgCZT22I4k41JnHbA0bS1ay12Yjnbv0bco4ikMeeySIAp84zLaB1pqAPOF7YRybnk%2Fd3YSOQR55ADQbmFq3CvbJ2JkmWYLB7HQ%2B3OkfDfa%2FFuxuFI5fJ03Iu709FYfxqGK5uO%2BylHaxy8xtxTgc5b4vv2f1UkfWEaNvO4lHKKiyUuQx4Y9ENHwpUaGl8XC1Kd%2BxeYy%2FY5Mve61vNQ%2FftxQwX83K1f5Od%2FemP%2FDsNqCO7YUgO9FBj9TrJCccUCJxDvi2StIUq%2BnxBwHAsihJk3qjiTFL4aQAmztpO%2FkoRjSkdrF28O%2F7XPnq6n9Y4EboJSwWuK7tRyQyhUscLgRhrmDE9xi01jGn3EZ0UMtnphuFJBAh9E40grbJiwS08CZzLCcKhOuBmu2Eocu5TawgjKG1tyBHCdeCbBVKy%2FSolBaGQRA4XuCZsIobCGJZkpJQWJSYphXEEjpyMzLbLmohO%2FD%2FgKuf3x%2FMdaAa%2FgCzu3if7ujIadR%2F%2BfLlEDuoe18B%2Baw2b1suAY4kux9PYBBhwapHiWlvkhaNuKsWOhgtc2pblLouda%2BvXT80x05oTp3p38eiiCDWFwiBFwTC6BiE0VGIU6r15ykE7JOdEoZjS9t2W6cH2%2B11onnBkbAGNCZNhh7KHBMy%2FjBhtHw4SY909WFskR2IhN0XSuflLuGlkokuj%2F%2FHhPF9d6q5wn%2BTjH7gLxnb7b8B\" class=\"lazyload embed__frame\" data-width=\"1920\" data-height=\"1080\" frameborder=\"0\" scrolling=\"no\" allowfullscreen=\"allowfullscreen\" id=\"minneapolis-parents-of-sons-with-rare-condition-advocate-for-cure--hero\" title=\"Video: Minneapolis parents of sons with rare condition advocate for cure\" data-sort-time=\"1739724288000\" data-update-time=\"1739724288000\"><\/iframe><\/p><\/div>\n<p>          <button class=\"player-overlay__button--icon-close__mobile\" data-target=\"\" aria-label=\"Close sticky player\"><br \/>\n        <svg class=\"player-overlay__button--icon\"><use xlink:href=\"#player-icon-close\"\/><\/svg><\/button><\/p><\/div>\n<\/p><\/div><figcaption class=\"embed__caption-container\"><a href=\"https:\/\/www.cbsnews.com\/minnesota\/video\/minneapolis-parents-of-sons-with-rare-condition-advocate-for-cure\/\" class=\"embed__headline-link\" data-invalid-url-rewritten-http=\"\"><\/p>\n<p>          <span class=\"embed__icon\"><br \/>\n            <svg viewbox=\"0 0 32 32\" aria-hidden=\"true\"><use xlink:href=\"#icon-video\"\/><\/svg><\/span><\/p>\n<p>          <span class=\"embed__headline\">Minneapolis parents of sons with rare condition advocate for cure<\/span><\/p>\n<p>          <span class=\"embed__video-duration\">03:49<\/span><\/p>\n<p>                      <\/a><\/p>\n<\/figcaption><\/figure>\n<p>Caleb Kasner and his brother Duncan Kasner move around a little differently than average kids.<\/p>\n<p>The two brothers have Duchenne muscular dystrophy \u2014 a rare, inherited muscle-wasting disorder that has no cure.<\/p>\n<p>&#8220;Caleb stopped walking in December of &#8217;23, so a little over a year ago. Duncy stopped walking in April of &#8217;24,&#8221; their mom, Sarah Kasner, said. &#8220;Eventually it just affects all parts of every muscle, heart and lungs included.&#8221;<\/p>\n<p>Their journey with Duchenne started nearly six years ago when both boys were diagnosed within weeks of each other.\u00a0<\/p>\n<p>&#8220;We all just kind of crumbled through the floor and cried because we didn&#8217;t even know what to expect,&#8221; Sarah Kasner said.<\/p>\n<p>The 11- and 9-year-olds are both wheelchair-bound and require 24\/7 care.\u00a0<\/p>\n<p>In the last few months, Dan and Sarah Kasner&#8217;s home has undergone construction, adding an elevator and accessible bathroom. The modifications made the make their ever-changing lives easier.<\/p>\n<p>&#8220;Understanding that nothing is ever going to get better, it&#8217;s only going to keep progressing. Figure out the way to stay strong and keep them smiling as long as we can,&#8221; Dan Kasner said.<\/p>\n<p>Sarah Kasner says they have a huge support network that keeps them going amid the highs and lows.<\/p>\n<p>&#8220;They both have cardiomyopathy, which is scar tissue in their heart,&#8221; Sarah Kasner said. &#8220;More than 50% of their heart is filled with that.&#8221;<\/p>\n<p>There&#8217;s progress in the fight and a new gene therapy shows positive signs of slowing the disease&#8217;s progression. Unfortunately, it is not an option for the Kasner boys.<\/p>\n<p>&#8220;Let&#8217;s not stop the fight because I&#8217;m not going to stop even when they pass. I know this is a curable, fixable disease,&#8221; Sarah Kasner said.<\/p>\n<p>With a future unknown, the Kasners choose to love and live.<\/p>\n<p>&#8220;It&#8217;s so cliche but just like living in the present moment with what we have,&#8221; Sarah Kasner said.<\/p>\n<p>A huge resource for the Kasners is <a href=\"https:\/\/cureduchenne.org\/\" target=\"_blank\" rel=\"nofollow noopener\">CureDuchenne<\/a>, a global nonprofit  that works to fund research towards improving and extending the lives of everyone affected by the disorder.<\/p>\n<p>The organization also hosts conventions each year where the family can connect with others families facing the same disease.<\/p>\n<p><a href=\"https:\/\/kasners-kick-duchenne.square.site\/\" target=\"_blank\" rel=\"nofollow noopener\">The Kasners share a lot of their journey online with their &#8220;Kasners Kick Duchenne&#8221; page<\/a>.<\/p>\n<p>    <!-- data-recirc-source=\"queryly\" --><\/p>\n<aside class=\"component list recirculation component--type-recirculation \">\n<p><h3 class=\"component__title\">More from CBS News<\/h3>\n<\/p>\n<\/aside>\n<p><!-- tags --><\/p>\n<div class=\"content-author\">\n      <a href=\"https:\/\/www.cbsnews.com\/team\/beret-leone\/\" class=\"content-author__name\" data-invalid-url-rewritten-http=\"\">Beret Leone<\/a><\/p>\n<div class=\"content-author__bio\">\n<div class=\"content-author__image\">\n            <a href=\"https:\/\/www.cbsnews.com\/team\/beret-leone\/\" data-invalid-url-rewritten-http=\"\"><br \/>\n              <span class=\"img \"><img alt=\"web-beret-leone-1.jpg \" height=\"80\" width=\"80\" class=\" lazyload\" srcset=\"https:\/\/assets1.cbsnewsstatic.com\/hub\/i\/r\/2024\/11\/26\/57a4a41f-4c17-41aa-b461-39d7cbcf0770\/thumbnail\/80x80\/3df1647fbb059fb3ab1d4139ca68d3cd\/web-beret-leone-1.jpg?v=f303dc12868a012283443d8b9123e5fe 1x, https:\/\/assets2.cbsnewsstatic.com\/hub\/i\/r\/2024\/11\/26\/57a4a41f-4c17-41aa-b461-39d7cbcf0770\/thumbnail\/160x160\/ef05936b7c5ae3fc623c78f8beea9f42\/web-beret-leone-1.jpg?v=f303dc12868a012283443d8b9123e5fe 2x\"\/><\/span><br \/>\n            <\/a>\n          <\/div>\n<div class=\"content-author__full-information\">\n<p class=\"content-author__text\">Beret Leone is a native Minnesotan who joined the WCCO team as a reporter in September 2022 &#8211; and she&#8217;s thrilled be back home in the Twin Cities! Beret grew up in Chaska and graduated from Bethel University.<\/p>\n<\/p><\/div>\n<\/p><\/div>\n<\/p><\/div>\n<\/p><\/div>\n<p><script async src=\"https:\/\/pagead2.googlesyndication.com\/pagead\/js\/adsbygoogle.js?client=ca-pub-6606220950177433\"\r\n     crossorigin=\"anonymous\"><\/script>\r\n<!-- ItShrt World News -->\r\n<ins class=\"adsbygoogle\"\r\n     style=\"display:block\"\r\n     data-ad-client=\"ca-pub-6606220950177433\"\r\n     data-ad-slot=\"1882483372\"\r\n     data-ad-format=\"auto\"\r\n     data-full-width-responsive=\"true\"><\/ins>\r\n<script>\r\n     (adsbygoogle = window.adsbygoogle || []).push({});\r\n<\/script>\r\n<br \/>\n<br \/><a href=\"https:\/\/www.cbsnews.com\/news\/kasners-kick-duchennes-rare-muslce-conditon\/\">Source link <\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Minneapolis parents of sons with rare condition advocate for cure Minneapolis parents of sons with rare condition advocate for cure<\/p>\n","protected":false},"author":1,"featured_media":6953,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[36],"tags":[2032,2467],"class_list":["post-6952","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-health-2","tag-disabilities","tag-minneapolis"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v24.2 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Minneapolis parents share journey of having two sons with rare muscle-wasting disorder - World News<\/title>\n<meta name=\"description\" content=\"Caleb Kasner and his brother Duncan Kasner move around a little differently than average kids. 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