{"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\/ja\/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>\u540d\u79f0<\/strong>:\u00a0 Asher \u00a0<strong>\u5e74\u9f62<\/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>\u56fd\u540d<\/strong>: \u00a0New Zealand<\/p>\n<p><strong>LGMD\u30b5\u30d6\u30bf\u30a4\u30d7<\/strong>: Unknown<!--more--><\/p>\n<p>*** (Asher\u2019s mum Chloe assisted with the interview ***<\/p>\n<p><strong>\u00a0<\/strong><\/p>\n<p><strong>\u4f55\u6b73\u3067\u8a3a\u65ad\u3092\u53d7\u3051\u305f\u304b<\/strong>:<\/p>\n<p>Asher was diagnosed when he was 5 years old.<\/p>\n<p><strong>\u6700\u521d\u306e\u75c7\u72b6\u306f\uff1f<\/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>\u3054\u5bb6\u65cf\u306bLGMD\u306e\u65b9\u306f\u3044\u3089\u3063\u3057\u3083\u3044\u307e\u3059\u304b\uff1f <\/strong><\/p>\n<p>Asher is the first person, we assume he has a recessive form of LGMD.<\/p>\n<p><strong>LGMD\u3068\u5171\u306b\u751f\u304d\u3066\u3044\u304f\u4e0a\u3067\u3001\u6700\u3082\u56f0\u96e3\u3060\u3068\u611f\u3058\u308b\u3053\u3068\u306f\u4f55\u3067\u3059\u304b\uff1f<\/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>\u3042\u306a\u305f\u306e\u6700\u5927\u306e\u529f\u7e3e\u306f\u4f55\u3067\u3059\u304b\uff1f<\/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\u306f\u4eca\u306e\u3042\u306a\u305f\u306b\u3069\u306e\u3088\u3046\u306a\u5f71\u97ff\u3092\u4e0e\u3048\u3066\u3044\u307e\u3059\u304b\uff1f<\/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\u306b\u3064\u3044\u3066\u4e16\u754c\u306b\u77e5\u3063\u3066\u3082\u3089\u3044\u305f\u3044\u3053\u3068\u306f\uff1f<\/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>\u3082\u3057\u660e\u65e5\u3001\u3042\u306a\u305f\u306eLGMD\u304c \"\u6cbb\u308b \"\u3068\u3057\u305f\u3089\u3001\u307e\u305a\u4f55\u3092\u3057\u305f\u3044\u3067\u3059\u304b\uff1f<\/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>LGMD\u30b9\u30dd\u30c3\u30c8\u30e9\u30a4\u30c8\u30fb\u30a4\u30f3\u30bf\u30d3\u30e5\u30fc \"\u3092\u3082\u3063\u3068\u8aad\u307f\u305f\u3044\u65b9\u3001\u30a4\u30f3\u30bf\u30d3\u30e5\u30fc\u306b\u5fd7\u9858\u3057\u305f\u3044\u65b9\u306f\u3001\u4ee5\u4e0b\u306e\u30a6\u30a7\u30d6\u30b5\u30a4\u30c8\u3092\u3054\u89a7\u304f\u3060\u3055\u3044\u3002 <a href=\"https:\/\/www.lgmd-info.org\/ja\/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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