{"id":8657,"date":"2016-03-14T19:13:05","date_gmt":"2016-03-14T19:13:05","guid":{"rendered":"https:\/\/lpfch.org\/stephen-and-edwards-story\/"},"modified":"2024-01-31T23:11:12","modified_gmt":"2024-01-31T23:11:12","slug":"stephen-and-edwards-story","status":"publish","type":"post","link":"https:\/\/lpfch.org\/vi\/impact-stories\/stephen-and-edwards-story\/","title":{"rendered":"\u201cC\u00e1c con trai t\u00f4i \u0111\u00e3 t\u1ea1o ra t\u00e1c \u0111\u1ed9ng r\u1ed3i.\u201d"},"content":{"rendered":"

G\u1eb7p Stephen v\u00e0 Edward t\u1eeb Qu\u1eadn Alameda, CA.<\/h2>\n

Stephen v\u00e0 Edward s\u1ed1ng chung v\u1edbi h\u1ed9i ch\u1ee9ng Hunter.<\/p>\n

\"Stephen<\/p>\n

C\u00f3 kho\u1ea3ng 200-300 tr\u1ebb em, h\u1ea7u h\u1ebft l\u00e0 b\u00e9 trai, m\u1eafc h\u1ed9i ch\u1ee9ng Hunter \u1edf M\u1ef9. Pei Wang l\u00e0 m\u1eb9 c\u1ee7a hai b\u00e9, hi\u1ec7n 5 v\u00e0 8 tu\u1ed5i. C\u00f4 cho bi\u1ebft tu\u1ed5i th\u1ecd d\u1ef1 ki\u1ebfn c\u1ee7a c\u00e1c b\u00e9 l\u00e0 10-20 n\u0103m. M\u1ed9t tri\u1ec7u ch\u1ee9ng c\u1ee7a t\u00ecnh tr\u1ea1ng tho\u00e1i h\u00f3a ti\u1ebfn tri\u1ec3n n\u00e0y l\u00e0 c\u1ee9ng kh\u1edbp. Stephen \u0111\u00e3 m\u1ea5t kh\u1ea3 n\u0103ng t\u1ef1 m\u1eb7c qu\u1ea7n \u00e1o. (\u1ea2nh: Deanne Fitzmaurice)<\/p>\n

 <\/p>\n

\"Stephen<\/p>\n

C\u00e1c b\u00e9 trai Hunter b\u1ecb thi\u1ebfu m\u1ed9t lo\u1ea1i enzyme chuy\u1ec3n h\u00f3a quan tr\u1ecdng, \u1ea3nh h\u01b0\u1edfng \u0111\u1ebfn m\u1ecdi c\u01a1 quan trong c\u01a1 th\u1ec3 v\u00e0 g\u00e2y ra s\u1ef1 suy tho\u00e1i d\u1ea7n d\u1ea7n c\u1ee7a n\u00e3o b\u1ed9. H\u1ed9i ch\u1ee9ng Hunter c\u0169ng li\u00ean quan \u0111\u1ebfn ch\u1ee9ng t\u0103ng \u0111\u1ed9ng. (\u1ea2nh: Deanne Fitzmaurice)<\/p>\n

 <\/p>\n

\"Stephen<\/p>\n

Gi\u1ea5y t\u1edd c\u1ee7a Stephen v\u00e0 Edward \u2013 ch\u1ec9 ri\u00eang n\u0103m nay \u2013 \u0111\u00e3 chi\u1ebfm tr\u1ecdn m\u1ed9t ng\u0103n k\u00e9o trong t\u1ee7 h\u1ed3 s\u01a1 c\u1ee7a Pei. Hai c\u1eadu b\u00e9 tham gia l\u1edbp h\u1ecdc \u0111\u1eb7c bi\u1ec7t ban ng\u00e0y t\u1ea1i tr\u01b0\u1eddng v\u00e0 th\u01b0\u1eddng xuy\u00ean \u0111\u01b0\u1ee3c tr\u1ecb li\u1ec7u ngh\u1ec1 nghi\u1ec7p, v\u1eadt l\u00fd tr\u1ecb li\u1ec7u, ng\u00f4n ng\u1eef tr\u1ecb li\u1ec7u v\u00e0 h\u00e0nh vi. Ngo\u00e0i ra, c\u00e1c em c\u0169ng th\u01b0\u1eddng xuy\u00ean \u0111\u1ebfn g\u1eb7p c\u00e1c chuy\u00ean gia \u0111\u1ec3 theo d\u00f5i ch\u1ee9c n\u0103ng gan, ph\u1ed5i, tim, x\u01b0\u01a1ng, th\u1ea7n kinh, m\u1eaft v\u00e0 th\u00ednh gi\u00e1c. (\u1ea2nh: Deanne Fitzmaurice)<\/p>\n

 <\/p>\n

\"Stephen<\/p>\n

Pei v\u00e0 ch\u1ed3ng c\u00f4 \u0111\u00e3 ph\u1ea3i l\u1eafp nhi\u1ec1u ch\u1ed1t c\u1eeda tr\u01b0\u1edbc \u0111\u1ec3 ng\u0103n Stephen v\u00e0 Edward ch\u1ea1y ra \u0111\u01b0\u1eddng. Pei gi\u1ea3i th\u00edch r\u1eb1ng hai c\u1eadu b\u00e9 kh\u00f4ng h\u1ec1 c\u00f3 c\u1ea3m gi\u00e1c nguy hi\u1ec3m. (\u1ea2nh: Deanne Fitzmaurice)<\/p>\n

 <\/p>\n

\"Stephen<\/p>\n

Pei v\u00e0 hai trong s\u1ed1 ba ng\u01b0\u1eddi con trai c\u1ee7a b\u00e0, g\u1ea7n nh\u00e0 h\u1ecd \u1edf Qu\u1eadn Alameda. Pei v\u00e0 ch\u1ed3ng b\u00e0 c\u00f3 m\u1ed9t c\u1eadu con trai th\u1ee9 ba \u0111ang ph\u00e1t tri\u1ec3n b\u00ecnh th\u01b0\u1eddng. (\u1ea2nh: Deanne Fitzmaurice)<\/p>\n

 <\/p>\n

\"Stephen<\/p>\n

Stephen kh\u00f3c tr\u01b0\u1edbc bu\u1ed5i h\u1eb9n kh\u00e1m nha s\u0129 \u1edf Oakland, California. V\u00ec g\u1eb7p qu\u00e1 nhi\u1ec1u kh\u00f3 kh\u0103n trong nh\u1eefng bu\u1ed5i h\u1eb9n n\u00e0y, Pei ph\u1ea3i t\u00ecm nha s\u0129 c\u00f3 th\u1ec3 g\u00e2y m\u00ea ho\u1eb7c gi\u00fap c\u1eadu b\u00e9 gi\u1eef th\u0103ng b\u1eb1ng, ngay c\u1ea3 \u0111\u1ed1i v\u1edbi nh\u1eefng c\u00f4ng vi\u1ec7c nha khoa th\u00f4ng th\u01b0\u1eddng nh\u01b0 v\u1ec7 sinh r\u0103ng mi\u1ec7ng v\u00e0 tr\u00e1m r\u0103ng. Th\u00f4ng th\u01b0\u1eddng, c\u00f4 ph\u1ea3i \u0111\u1ee3i s\u00e1u th\u00e1ng ho\u1eb7c l\u00e2u h\u01a1n m\u1edbi c\u00f3 th\u1ec3 \u0111\u1eb7t l\u1ecbch h\u1eb9n cho Stephen. K\u1ebft qu\u1ea3 l\u00e0, Stephen \u0111\u00e3 ph\u1ea3i nh\u1ed5 r\u1ea5t nhi\u1ec1u r\u0103ng. (\u1ea2nh: Deanne Fitzmaurice)<\/p>\n

 <\/p>\n

\"Stephen<\/p>\n

Stephen v\u00e0 Edward \u0111\u1ebfn Kaiser Permanente \u1edf Oakland \u0111\u1ec3 \u0111i\u1ec1u tr\u1ecb thay th\u1ebf enzyme h\u00e0ng tu\u1ea7n. Ph\u01b0\u01a1ng ph\u00e1p \u0111i\u1ec1u tr\u1ecb n\u00e0y gi\u00fap l\u00e0m ch\u1eadm s\u1ef1 ti\u1ebfn tri\u1ec3n c\u1ee7a b\u1ec7nh, nh\u01b0ng kh\u00f4ng ph\u1ea3i l\u00e0 ph\u01b0\u01a1ng ph\u00e1p ch\u1eefa kh\u1ecfi. Pei v\u00e0 ch\u1ed3ng c\u00f4 \u0111\u1ec1u c\u00f3 b\u1eb1ng Ti\u1ebfn s\u0129 Sinh h\u1ecdc. "Nguy\u00ean nh\u00e2n g\u00e2y ra h\u1ed9i ch\u1ee9ng Hunter th\u1ef1c ra kh\u00e1 d\u1ec5 hi\u1ec3u. Nh\u01b0ng v\u00ec \u0111\u00e2y l\u00e0 m\u1ed9t c\u0103n b\u1ec7nh hi\u1ebfm g\u1eb7p, n\u00ean kh\u00f4ng c\u00f3 nhi\u1ec1u s\u1ef1 quan t\u00e2m v\u1ec1 m\u1eb7t th\u01b0\u01a1ng m\u1ea1i \u0111\u1ec3 ph\u00e1t tri\u1ec3n c\u00e1c ph\u01b0\u01a1ng ph\u00e1p \u0111i\u1ec1u tr\u1ecb t\u1ed1t h\u01a1n." (\u1ea2nh: Deanne Fitzmaurice)<\/p>\n

 <\/p>\n

\"Stephen<\/p>\n

V\u1edbi s\u1ef1 gi\u00fap \u0111\u1ee1 c\u1ee7a Merry Modesto (ngo\u00e0i c\u00f9ng b\u00ean tr\u00e1i), tr\u1ee3 l\u00fd l\u00e2m s\u00e0ng l\u00e2u n\u0103m c\u1ee7a m\u00ecnh, Pei cho hai con \u0103n v\u00e0 gi\u00fap ch\u00fang vui ch\u01a1i trong su\u1ed1t li\u1ec7u tr\u00ecnh thay th\u1ebf enzyme k\u00e9o d\u00e0i ba gi\u1edd. Sau b\u1ed1n n\u0103m \u0111\u1ebfn kh\u00e1m \u0111\u1ecbnh k\u1ef3 h\u00e0ng tu\u1ea7n, c\u00f4 \u0111\u00e3 tr\u1edf th\u00e0nh m\u1ed9t chuy\u00ean gia trong vi\u1ec7c ki\u1ec3m tra n\u1ed3ng \u0111\u1ed9 enzyme v\u00e0 \u0111\u1eb7t \u1ed1ng th\u00f4ng ng\u1ef1c (m\u1ed9t thi\u1ebft b\u1ecb nh\u1ecf \u0111\u01b0\u1ee3c \u0111\u1eb7t d\u01b0\u1edbi da, cho ph\u00e9p ti\u00eam thu\u1ed1c ho\u1eb7c l\u1ea5y m\u00e1u d\u1ec5 d\u00e0ng h\u01a1n) cho c\u00e1c con trai. C\u00f4 m\u01a1 \u01b0\u1edbc c\u00f3 th\u1ec3 th\u1ef1c hi\u1ec7n li\u1ec7u ph\u00e1p n\u00e0y t\u1ea1i nh\u00e0 ri\u00eang, \u0111\u1ec3 tr\u00e1nh nh\u1eefng chuy\u1ebfn \u0111i kh\u00f3 kh\u0103n \u0111\u1ebfn b\u1ec7nh vi\u1ec7n. (\u1ea2nh: Deanne Fitzmaurice)<\/p>\n

 <\/p>\n

\"Stephen<\/p>\n

Pei h\u00f4n con trai gi\u1eefa, Edward. "C\u00f3 l\u1ebd ch\u00ednh nh\u1eefng \u1ea3nh h\u01b0\u1edfng b\u1ea1n t\u1ea1o ra m\u1edbi l\u00e0 \u00fd ngh\u0129a cu\u1ed1i c\u00f9ng c\u1ee7a cu\u1ed9c s\u1ed1ng", Pei, ng\u01b0\u1eddi \u0111\u00e3 tr\u1edf th\u00e0nh ng\u01b0\u1eddi \u1ee7ng h\u1ed9 cho c\u00e1c con trai v\u00e0 nh\u1eefng tr\u1ebb em c\u00f3 nhu c\u1ea7u \u0111\u1eb7c bi\u1ec7t kh\u00e1c, chia s\u1ebb. "N\u1ebfu b\u1ea1n ngh\u0129 theo c\u00e1ch \u0111\u00f3, cu\u1ed9c \u0111\u1eddi b\u1ea1n d\u00e0i hay ng\u1eafn c\u0169ng kh\u00f4ng quan tr\u1ecdng. C\u00e1c con trai t\u00f4i \u0111\u00e3 t\u1ea1o ra nh\u1eefng \u1ea3nh h\u01b0\u1edfng nh\u1ea5t \u0111\u1ecbnh r\u1ed3i." (\u1ea2nh: Deanne Fitzmaurice)<\/p>\n

 <\/p>\n

B\u1ea3n \u0111\u1ed3 ch\u0103m s\u00f3c c\u1ee7a Stephen v\u00e0 Edward<\/h2>\n

\"\"<\/p>\n

\u201cB\u1ea3n \u0111\u1ed3 ch\u0103m s\u00f3c\u201d c\u1ee7a Stephen v\u00e0 Edward minh h\u1ecda m\u1ea1ng l\u01b0\u1edbi ph\u1ee9c t\u1ea1p c\u1ee7a d\u1ecbch v\u1ee5 ch\u0103m s\u00f3c v\u00e0 b\u1ea3o hi\u1ec3m y t\u1ebf, c\u0169ng nh\u01b0 c\u00e1c d\u1ecbch v\u1ee5 gi\u00e1o d\u1ee5c v\u00e0 h\u1ed7 tr\u1ee3 c\u1ea7n thi\u1ebft cho tr\u1ebb em c\u00f3 v\u1ea5n \u0111\u1ec1 s\u1ee9c kh\u1ecfe ph\u1ee9c t\u1ea1p v\u00e0 gia \u0111\u00ecnh c\u1ee7a c\u00e1c em.<\/p>","protected":false},"excerpt":{"rendered":"

G\u1eb7p g\u1ee1 Stephen v\u00e0 Edward \u0111\u1ebfn t\u1eeb Qu\u1eadn Alameda, California. Stephen v\u00e0 Edward s\u1ed1ng chung v\u1edbi h\u1ed9i ch\u1ee9ng Hunter. C\u00f3 kho\u1ea3ng 200-300 tr\u1ebb em, h\u1ea7u h\u1ebft l\u00e0 b\u00e9 trai, m\u1eafc h\u1ed9i ch\u1ee9ng Hunter\u2026<\/p>","protected":false},"author":17,"featured_media":10569,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_relevanssi_hide_post":"","_relevanssi_hide_content":"","_relevanssi_pin_for_all":"","_relevanssi_pin_keywords":"","_relevanssi_unpin_keywords":"","_relevanssi_related_keywords":"","_relevanssi_related_include_ids":"","_relevanssi_related_exclude_ids":"","_relevanssi_related_no_append":"","_relevanssi_related_not_related":"","_relevanssi_related_posts":"","_relevanssi_noindex_reason":"","footnotes":""},"categories":[20],"class_list":["post-8657","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-cyshcn-stories"],"acf":[],"yoast_head":"\n"My boys have already made an impact." - Lucile Packard Foundation for Children's Health<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"http:\/\/lpfch.org\/vi\/impact-stories\/stephen-and-edwards-story\/\" \/>\n<meta property=\"og:locale\" content=\"vi_VN\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\""My boys have already made an impact."\" \/>\n<meta property=\"og:description\" content=\"Meet Stephen and Edward from Alameda County, CA. Stephen and Edward live with Hunter syndrome. There are 200-300 children, virtually all boys, with Hunter syndrome...\" \/>\n<meta property=\"og:url\" content=\"http:\/\/lpfch.org\/vi\/impact-stories\/stephen-and-edwards-story\/\" \/>\n<meta property=\"og:site_name\" content=\"Lucile Packard Foundation for Children's Health\" \/>\n<meta property=\"article:published_time\" content=\"2016-03-14T19:13:05+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2024-01-31T23:11:12+00:00\" \/>\n<meta property=\"og:image\" content=\"http:\/\/lpfch.org\/wp-content\/uploads\/2016\/03\/stephenedward_df39711.jpg\" \/>\n\t<meta property=\"og:image:width\" content=\"1200\" \/>\n\t<meta property=\"og:image:height\" content=\"799\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/jpeg\" \/>\n<meta name=\"author\" content=\"admin\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Written by\" \/>\n\t<meta name=\"twitter:data1\" content=\"admin\" \/>\n\t<meta name=\"twitter:label2\" content=\"Est. reading time\" \/>\n\t<meta name=\"twitter:data2\" content=\"5 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"http:\/\/lpfch.org\/vi\/impact-stories\/stephen-and-edwards-story\/#article\",\"isPartOf\":{\"@id\":\"http:\/\/lpfch.org\/vi\/impact-stories\/stephen-and-edwards-story\/\"},\"author\":{\"name\":\"admin\",\"@id\":\"https:\/\/lpfch.org\/km\/#\/schema\/person\/0c27ee3a03f60d4845413e6163db996c\"},\"headline\":\"“My boys have already made an impact.”\",\"datePublished\":\"2016-03-14T19:13:05+00:00\",\"dateModified\":\"2024-01-31T23:11:12+00:00\",\"mainEntityOfPage\":{\"@id\":\"http:\/\/lpfch.org\/vi\/impact-stories\/stephen-and-edwards-story\/\"},\"wordCount\":575,\"commentCount\":0,\"image\":{\"@id\":\"http:\/\/lpfch.org\/vi\/impact-stories\/stephen-and-edwards-story\/#primaryimage\"},\"thumbnailUrl\":\"https:\/\/lpfch.org\/wp-content\/uploads\/2016\/03\/stephenedward_df39711.jpg\",\"articleSection\":[\"CYSHCN Stories\"],\"inLanguage\":\"vi\",\"potentialAction\":[{\"@type\":\"CommentAction\",\"name\":\"Comment\",\"target\":[\"http:\/\/lpfch.org\/vi\/impact-stories\/stephen-and-edwards-story\/#respond\"]}]},{\"@type\":\"WebPage\",\"@id\":\"http:\/\/lpfch.org\/vi\/impact-stories\/stephen-and-edwards-story\/\",\"url\":\"http:\/\/lpfch.org\/vi\/impact-stories\/stephen-and-edwards-story\/\",\"name\":\"\\\"My boys have already made an impact.\\\" - 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Qu\u1ef9 Lucile Packard v\u00ec S\u1ee9c kh\u1ecfe Tr\u1ebb em","robots":{"index":"index","follow":"follow","max-snippet":"max-snippet:-1","max-image-preview":"max-image-preview:large","max-video-preview":"max-video-preview:-1"},"canonical":"http:\/\/lpfch.org\/vi\/impact-stories\/stephen-and-edwards-story\/","og_locale":"vi_VN","og_type":"article","og_title":"\"My boys have already made an impact.\"","og_description":"Meet Stephen and Edward from Alameda County, CA. 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