{"id":1547,"date":"2017-08-23T13:44:59","date_gmt":"2017-08-23T18:44:59","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1547"},"modified":"2017-08-23T13:44:59","modified_gmt":"2017-08-23T18:44:59","slug":"asher","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/ko\/individuals-with-lgmd-interviews\/2017\/08\/23\/asher\/","title":{"rendered":"INDIVIDUAL WITH LGMD:  Asher"},"content":{"rendered":"<p><strong>LGMD \u201c Spotlight Interview\u201d<\/strong><\/p>\n<p><strong>\uc774\ub984<\/strong>:\u00a0 Asher \u00a0<strong>\ub098\uc774<\/strong>: \u00a010 yrs. old<a href=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2017\/08\/Unknown-Asher-H.png\"><img decoding=\"async\" class=\"lazyload size-medium wp-image-1548 alignright\" src=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%27300%27%20height%3D%27169%27%20viewBox%3D%270%200%20300%20169%27%3E%3Crect%20width%3D%27300%27%20height%3D%27169%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2017\/08\/Unknown-Asher-H-300x169.png\" alt=\"\" width=\"300\" height=\"169\" \/><\/a><\/p>\n<p><strong>\uad6d\uac00<\/strong>: \u00a0New Zealand<\/p>\n<p><strong>LGMD \ud558\uc704 \uc720\ud615<\/strong>: Unknown<!--more--><\/p>\n<p>*** (Asher\u2019s mum Chloe assisted with the interview ***<\/p>\n<p><strong>\u00a0<\/strong><\/p>\n<p><strong>\uba87 \uc0b4\uc5d0 \uc9c4\ub2e8\ubc1b\uc73c\uc168\ub098\uc694?<\/strong>:<\/p>\n<p>Asher was diagnosed when he was 5 years old.<\/p>\n<p><strong>\uccab \uc99d\uc0c1\uc740 \ubb34\uc5c7\uc774\uc5c8\ub098\uc694?<\/strong>:<\/p>\n<p>He was slow to crawl, stand and walk. I noticed he struggled in comparison to his peers to use the playground equipment and run races as a preschooler and when he first started at school.<\/p>\n<p><strong>\ub2e4\ub978 \uac00\uc871 \uc911\uc5d0 LGMD\ub97c \uc553\uace0 \uc788\ub294 \uc0ac\ub78c\uc774 \uc788\ub098\uc694? <\/strong><\/p>\n<p>Asher is the first person, we assume he has a recessive form of LGMD.<\/p>\n<p><strong>LGMD\uc640 \ud568\uaed8 \uc0dd\ud65c\ud558\uba74\uc11c \uac00\uc7a5 \uc5b4\ub824\uc6b4 \uc810\uc740 \ubb34\uc5c7\uc778\uac00\uc694?<\/strong>:<\/p>\n<p>Asher says \u201cMy greatest challenge is that I can\u2019t keep up with my friends and I get very tired. \u201c<\/p>\n<p>Asher\u2019s Mum says \u201cthe hardest thing for me is the uncertainty of the future and worrying that I am not making the right decisions for his health and well-being. I wish we had a complete diagnosis including subtype so I had a bit more understanding of what to expect going forward\u201d<\/p>\n<p><strong>\uac00\uc7a5 \ud070 \uc131\uacfc\ub294 \ubb34\uc5c7\uc778\uac00\uc694?<\/strong>:<\/p>\n<p>Asher says \u201cHmmm, I\u2019m not sure. That\u2019s deep. I have done a lot of things. I guess my greatest accomplishment is when I won an award at the National Junior Disability Games for most promising Waka Ama Athlete. That was really good\u201d<\/p>\n<p><strong>\u00a0<\/strong><\/p>\n<p><strong>LGMD\uac00 \uc9c0\uae08\uc758 \uc790\uc2e0\uc744 \ub9cc\ub4dc\ub294 \ub370 \uc5b4\ub5a4 \uc601\ud5a5\uc744 \ubbf8\ucce4\ub098\uc694?<\/strong><\/p>\n<p>Asher says: \u201cWell, I have a really cool power chair and that makes me pretty cool. My seat is more comfortable than most people\u2019s seats are \u2013 so that is pretty cool. Plus I get to do really fun stuff like disability games and adapted sport. So yeah Muscular Dystrophy is good like that\u201d<\/p>\n<p>Asher\u2019s Mum says: \u201chaving a child with a disability has changed a lot about our lives and what we had expected. It\u2019s made me more understanding and empathetic of other parents\u2019 challenges. I know what it feels like to be overwhelmed. I have signed up to be a support parent for others through an organization called parent to parent and I feel really good about that.\u00a0 I like the idea that we are stronger together.\u201d<\/p>\n<p><strong>\u00a0<\/strong><\/p>\n<p><strong>LGMD\uc5d0 \ub300\ud574 \uc804 \uc138\uacc4\uc5d0 \uc54c\ub9ac\uace0 \uc2f6\uc740 \ub0b4\uc6a9<\/strong>:<\/p>\n<p>Asher says \u201cI want the world to know that it is hard and people who have it feel really tired.\u201d<\/p>\n<p>Asher\u2019s Mum says \u201cI\u2019d like people to know that it is progressive so what people can do today they may not be able to do in the future. I think it changes the way we live our lives because we try to make the most out of every day and every experience.\u201d<\/p>\n<p><strong>\ub0b4\uc77c LGMD\uac00 \"\uc644\uce58\"\ub420 \uc218 \uc788\ub2e4\uba74 \uac00\uc7a5 \uba3c\uc800 \ud558\uace0 \uc2f6\uc740 \uc77c\uc740 \ubb34\uc5c7\uc778\uac00\uc694?<\/strong>:<\/p>\n<p>Asher says \u201cI would run the cross country at school and not come last.\u201d<\/p>\n<p>Asher\u2019s Mum says \u201cthe first thing we would do as a family is go to a theme park and do every ride. Then we would have a bubble dance party til late and not worry about anyone being too tired\u201d<\/p>\n<p>&nbsp;<\/p>\n<p>\ub354 \ub9ce\uc740 \"LGMD \uc2a4\ud3ec\ud2b8\ub77c\uc774\ud2b8 \uc778\ud130\ubdf0\"\ub97c \uc77d\uac70\ub098 \ub2e4\uc74c \uc778\ud130\ubdf0\uc5d0 \uc9c0\uc6d0\ud558\ub824\uba74 \ub2e4\uc74c \uc6f9 \uc0ac\uc774\ud2b8\ub97c \ubc29\ubb38\ud558\uc138\uc694. <a href=\"https:\/\/www.lgmd-info.org\/ko\/spotlight-interviews\/\">https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a><\/p>","protected":false},"excerpt":{"rendered":"<p>LGMD \u201c Spotlight Interview\u201d Name:\u00a0 Asher \u00a0Age: \u00a010 yrs. old [&hellip;]<\/p>","protected":false},"author":1,"featured_media":1548,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13],"tags":[80,47],"class_list":["post-1547","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","tag-new-zealand","tag-unknown-sub-type"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - 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