{"id":15584,"date":"2021-05-20T18:44:57","date_gmt":"2021-05-20T18:44:57","guid":{"rendered":"https:\/\/lpfch.org\/meet-david-your-summer-scamper-patient-hero\/"},"modified":"2024-07-01T21:46:00","modified_gmt":"2024-07-01T21:46:00","slug":"meet-david-your-summer-scamper-patient-hero","status":"publish","type":"post","link":"http:\/\/lpfch.org\/vi\/impact-stories\/meet-david-your-summer-scamper-patient-hero\/","title":{"rendered":"G\u1eb7p g\u1ee1 David, anh h\u00f9ng b\u1ec7nh nh\u00e2n m\u00f9a h\u00e8 c\u1ee7a b\u1ea1n"},"content":{"rendered":"<p>&nbsp;<\/p>\n<p class=\"\" style=\"white-space: pre-wrap;\">\u201cN\u1eb1m vi\u1ec7n kh\u00f4ng l\u00e0m t\u00f4i s\u1ee3. G\u1eb7p ph\u1ea3i v\u1ea5n \u0111\u1ec1 m\u1edbi c\u0169ng kh\u00f4ng c\u00f2n \u0111\u00e1ng s\u1ee3 n\u1eefa v\u00ec chuy\u1ec7n \u0111\u00f3 \u0111\u00e3 x\u1ea3y ra nhi\u1ec1u l\u1ea7n r\u1ed3i. T\u00f4i kh\u00f4ng bi\u1ebft n\u1eefa, c\u00f3 l\u1ebd m\u00e1u c\u1ee7a t\u00f4i kh\u00f4ng h\u1ee3p v\u1edbi t\u00f4i l\u1eafm.\u201d<\/p>\n<p class=\"\" style=\"white-space: pre-wrap;\">N\u0103m 15 tu\u1ed5i, David \u0111\u00e3 s\u1ed1ng v\u00e0 ra v\u00e0o B\u1ec7nh vi\u1ec7n Nhi Lucile Packard Stanford th\u01b0\u1eddng xuy\u00ean \u0111\u1ebfn n\u1ed7i c\u1eadu c\u00f3 th\u1ec3 gi\u1ea3i th\u00edch v\u1ec1 b\u1ec7nh thi\u1ebfu m\u00e1u h\u1ed3ng c\u1ea7u h\u00ecnh li\u1ec1m, m\u1ed9t ch\u1ee9ng r\u1ed1i lo\u1ea1n m\u00e1u di truy\u1ec1n, c\u1ee7a m\u00ecnh t\u1ed1t h\u01a1n b\u1ea5t k\u1ef3 ai.<\/p>\n<p class=\"\" style=\"white-space: pre-wrap;\">\u201cH\u1ed3ng c\u1ea7u c\u1ee7a b\u1ea1n ph\u1ea3i c\u00f3 h\u00ecnh tr\u00f2n v\u00e0 ch\u1ee9a oxy. H\u1ed3ng c\u1ea7u c\u1ee7a t\u00f4i c\u00f3 h\u00ecnh b\u00e1n nguy\u1ec7t, h\u00ecnh l\u01b0\u1ee1i li\u1ec1m, \u0111\u00f3 l\u00e0 l\u00fd do t\u1ea1i sao n\u00f3 \u0111\u01b0\u1ee3c g\u1ecdi l\u00e0 b\u1ec7nh thi\u1ebfu m\u00e1u h\u1ed3ng c\u1ea7u h\u00ecnh l\u01b0\u1ee1i li\u1ec1m, v\u00ec v\u1eady t\u00f4i kh\u00f4ng nh\u1eadn \u0111\u01b0\u1ee3c l\u01b0\u1ee3ng oxy nh\u01b0 b\u00ecnh th\u01b0\u1eddng,\u201d David n\u00f3i trong b\u1ed9 phim t\u00e0i li\u1ec7u \u201cHuman Nature\u201d n\u0103m 2019 c\u1ee7a Adam Bolt tr\u00ean Netflix.<\/p>\n<p class=\"\" style=\"white-space: pre-wrap;\">\u201cB\u1ec7nh n\u00e0y th\u01b0\u1eddng \u0111\u01b0\u1ee3c g\u1ecdi l\u00e0 b\u1ec7nh ph\u00e2n t\u1eed \u0111\u1ea7u ti\u00ean. N\u00f3 do m\u1ed9t s\u1ef1 thay \u0111\u1ed5i duy nh\u1ea5t trong tr\u00ecnh t\u1ef1 DNA g\u00e2y ra,\u201d gi\u1ea3i th\u00edch Matt Porteus, MD, PhD, Gi\u00e1o s\u01b0 Sutardja Chuk v\u1ec1 Y h\u1ecdc \u0110i\u1ec1u tr\u1ecb v\u00e0 Ch\u1ea9n \u0111o\u00e1n t\u1ea1i \u0110\u1ea1i h\u1ecdc Stanford. \u201c\u0110\u00f3 l\u00e0 ch\u1eef &#039;A&#039; bi\u1ebfn \u0111\u1ed5i th\u00e0nh ch\u1eef &#039;T&#039;. N\u00f3 tr\u1edf n\u00ean r\u1ea5t c\u1ee9ng, v\u00e0 kh\u00f4ng th\u1ec3 di chuy\u1ec3n qua \u0111\u01b0\u1ee3c, khi\u1ebfn h\u1ed3ng c\u1ea7u kh\u00f4ng th\u1ec3 \u0111\u1ebfn c\u00e1c m\u00f4 \u0111\u1ec3 cung c\u1ea5p oxy. Khi oxy b\u1ecb ch\u1eb7n, c\u00e1c m\u00f4 \u0111\u00f3 s\u1ebd ho\u1ea1t \u0111\u1ed9ng kh\u00f4ng t\u1ed1t v\u00e0 b\u1ecb t\u1ed5n th\u01b0\u01a1ng.\u201d<\/p>\n<p class=\"\" style=\"white-space: pre-wrap;\">Hi\u1ec7n t\u1ea1i, tu\u1ed5i th\u1ecd trung b\u00ecnh c\u1ee7a b\u1ec7nh nh\u00e2n m\u1eafc b\u1ec7nh thi\u1ebfu m\u00e1u h\u1ed3ng c\u1ea7u h\u00ecnh li\u1ec1m ch\u1ec9 t\u1eeb 42 \u0111\u1ebfn 47 n\u0103m. \u0110\u00f3 l\u00e0 42-47 n\u0103m \u0111\u1ea7y r\u1eaby nh\u1eefng l\u1ea7n ch\u1ea1y th\u1eadn nh\u00e2n t\u1ea1o, nh\u1eefng c\u01a1n \u0111au d\u1eef d\u1ed9i v\u00e0 nguy c\u01a1 \u0111\u1ed9t qu\u1ef5 c\u0169ng nh\u01b0 suy t\u1ea1ng. Th\u1ebf nh\u01b0ng, nh\u1eefng r\u1ee7i ro n\u00e0y kh\u00f4ng ng\u0103n c\u1ea3n David s\u1ed1ng \u0111\u00fang v\u1edbi tu\u1ed5i th\u01a1 c\u1ee7a m\u00ecnh. C\u1eadu b\u00e9 kh\u00f4ng th\u1ec3 b\u1ecb c\u1ea3n tr\u1edf b\u1edfi \u0111i\u1ec1u m\u00ecnh y\u00eau th\u00edch nh\u1ea5t: ch\u01a1i b\u00f3ng r\u1ed5.<\/p>\n<p class=\"\" style=\"white-space: pre-wrap;\">\u201cC\u01a1n \u0111au c\u1ee9 nh\u01b0 nh\u00f3i v\u1eady,\u201d David n\u00f3i v\u1ec1 c\u01a1n \u0111au. \u201cT\u00f4i c\u00f3 th\u1ec3 tr\u1ea3i qua nh\u1eefng c\u01a1n \u0111au nh\u1eb9 kh\u00f4ng \u0111\u00e1ng k\u1ec3, r\u1ed3i sau \u0111\u00f3 l\u1ea1i b\u1ecb \u0111au d\u1eef d\u1ed9i h\u01a1n. Nh\u01b0ng t\u00f4i s\u1ebd kh\u00f4ng b\u1ecf ch\u01a1i b\u00f3ng r\u1ed5. B\u1ea1n kh\u00f4ng th\u1ec3 c\u1ee9 th\u1ebf m\u00e0 kh\u00f4ng ch\u01a1i b\u00f3ng r\u1ed5 \u0111\u01b0\u1ee3c.\u201d<\/p>\n<p class=\"\" style=\"white-space: pre-wrap;\">Nh\u01b0ng gi\u1edd \u0111\u00e2y, \u0111\u00e3 c\u00f3 hy v\u1ecdng cho nhi\u1ec1u tr\u1ebb em nh\u01b0 David. Ti\u1ebfn s\u0129 Porteus \u0111ang s\u1eed d\u1ee5ng CRISPR, m\u1ed9t c\u00f4ng c\u1ee5 ch\u1ec9nh s\u1eeda gen mang t\u00ednh c\u00e1ch m\u1ea1ng, \u0111\u1ec3 ph\u00e1t tri\u1ec3n ph\u01b0\u01a1ng ph\u00e1p ch\u1eefa tr\u1ecb c\u00e1c b\u1ec7nh nh\u01b0 thi\u1ebfu m\u00e1u h\u1ed3ng c\u1ea7u h\u00ecnh l\u01b0\u1ee1i li\u1ec1m.<\/p>\n<p class=\"\" style=\"white-space: pre-wrap;\">\u201cTr\u01b0\u1edbc \u0111\u00e2y ch\u00fang t\u00f4i kh\u00f4ng c\u00f3 c\u00f4ng c\u1ee5 \u0111\u1ec3 thay \u0111\u1ed5i ch\u00ednh x\u00e1c t\u1eebng ch\u1eef c\u00e1i, \u0111\u1eb7c bi\u1ec7t l\u00e0 ch\u1ec9 m\u1ed9t ch\u1eef c\u00e1i. Tr\u01b0\u1edbc khi c\u00f3 CRISPR, ch\u00fang t\u00f4i ch\u1ec9 s\u1eeda \u0111\u01b0\u1ee3c l\u1ed7i 1-2%. Gi\u1edd \u0111\u00e2y, ch\u00fang t\u00f4i \u0111\u00e3 c\u00f3 th\u1ec3 s\u1eeda \u0111\u01b0\u1ee3c l\u1ed7i 50-80% trong t\u1ebf b\u00e0o,\u201d Ti\u1ebfn s\u0129 Porteus h\u00e0o h\u1ee9ng n\u00f3i. \u201c\u0110i\u1ec1u n\u00e0y th\u1ef1c s\u1ef1 c\u00f3 th\u1ec3 hi\u1ec7u qu\u1ea3. \u0110i\u1ec1u n\u00e0y th\u1ef1c s\u1ef1 c\u00f3 th\u1ec3 ch\u1eefa kh\u1ecfi b\u1ec7nh cho b\u1ec7nh nh\u00e2n. Ch\u00fang t\u00f4i c\u00f3 chuy\u00ean m\u00f4n \u0111\u1ec3 l\u00e0m \u0111i\u1ec1u \u0111\u00f3. Ch\u00fang t\u00f4i c\u00f3 c\u01a1 s\u1edf h\u1ea1 t\u1ea7ng t\u1ea1i t\u1ea7ng 5 c\u1ee7a B\u1ec7nh vi\u1ec7n Nhi Lucile Packard \u0111\u1ec3 \u0111i\u1ec1u tr\u1ecb cho nh\u1eefng b\u1ec7nh nh\u00e2n n\u00e0y.\u201d<\/p>\n<p class=\"\" style=\"white-space: pre-wrap;\">M\u1edbi \u0111\u00e2y, David \u0111\u00e3 b\u1ea5t ng\u1edd g\u1ecdi \u0111i\u1ec7n video cho Ti\u1ebfn s\u0129 Porteus \u0111\u1ec3 tr\u00f2 chuy\u1ec7n v\u00e0 c\u1ea3m \u01a1n \u00f4ng v\u1ec1 nh\u1eefng n\u1ed7 l\u1ef1c t\u00ecm ki\u1ebfm ph\u01b0\u01a1ng ph\u00e1p ch\u1eefa tr\u1ecb.<\/p>\n<p class=\"\" style=\"white-space: pre-wrap;\">\u201cB\u1ec7nh vi\u1ec7n n\u00e0y \u0111\u00e3 tr\u1edf th\u00e0nh ng\u00f4i nh\u00e0 th\u1ee9 hai c\u1ee7a t\u00f4i, v\u00e0 nghe c\u00f3 v\u1ebb k\u1ef3 l\u1ea1 khi n\u00f3i \u0111i\u1ec1u n\u00e0y nh\u01b0ng m\u1ed9t s\u1ed1 ng\u01b0\u1eddi t\u00f4i y\u00eau qu\u00fd nh\u1ea5t l\u1ea1i l\u00e0 nh\u1eefng ng\u01b0\u1eddi t\u00f4i g\u1eb7p \u1edf b\u1ec7nh vi\u1ec7n ho\u1eb7c l\u00e0m vi\u1ec7c \u1edf \u0111\u00f3,\u201d David n\u00f3i. \u201cV\u00e0 t\u00f4i th\u1eadm ch\u00ed kh\u00f4ng c\u1ea7n ph\u1ea3i quen bi\u1ebft h\u1ecd, t\u00f4i c\u00f3 th\u1ec3 thay m\u1eb7t t\u1ea5t c\u1ea3 nh\u1eefng ng\u01b0\u1eddi kh\u00e1c m\u1eafc b\u1ec7nh thi\u1ebfu m\u00e1u h\u1ed3ng c\u1ea7u h\u00ecnh li\u1ec1m, v\u00e0 v\u1ec1 c\u01a1 b\u1ea3n l\u00e0 m\u1ecdi lo\u1ea1i b\u1ec7nh kh\u00e1c, n\u00f3i cho h\u1ecd nghe. C\u1ea3m \u01a1n b\u00e1c s\u0129 Porteus.\u201d<\/p>\n<p class=\"\" style=\"white-space: pre-wrap;\">\u201cT\u00f4i th\u1ef1c s\u1ef1 \u0111\u00e1nh gi\u00e1 cao \u0111i\u1ec1u \u0111\u00f3,\u201d Ti\u1ebfn s\u0129 Porteus \u0111\u00e1p l\u1ea1i. \u201cNh\u01b0ng t\u00f4i c\u0169ng mu\u1ed1n nh\u1ea5n m\u1ea1nh r\u1eb1ng th\u1ef1c s\u1ef1 c\u00f3 r\u1ea5t nhi\u1ec1u ng\u01b0\u1eddi trong ch\u00fang ta c\u00f9ng tham gia v\u00e0o vi\u1ec7c n\u00e0y. Nh\u1eefng vi\u1ec7c nh\u01b0 th\u1ebf n\u00e0y kh\u00f4ng ch\u1ec9 do m\u1ed9t ng\u01b0\u1eddi l\u00e0m. N\u00f3 c\u1ea7n c\u1ea3 m\u1ed9t \u0111\u1ed9i ng\u0169, v\u00e0 b\u1ea1n c\u00f3 c\u1ea3 m\u1ed9t \u0111\u1ed9i ng\u0169 h\u1ed7 tr\u1ee3 ph\u00eda sau, v\u00e0 b\u1ea1n s\u1ebd lu\u00f4n c\u00f3 c\u1ea3 m\u1ed9t \u0111\u1ed9i ng\u0169 h\u1ed7 tr\u1ee3 ph\u00eda sau.\u201d<\/p>\n<p class=\"\" style=\"white-space: pre-wrap;\">C\u1ea3m \u01a1n b\u1ea1n \u0111\u00e3 l\u00e0 m\u1ed9t ph\u1ea7n trong nh\u00f3m c\u1ee7a David. David v\u1eabn \u0111ang \u0111\u01b0\u1ee3c \u0111i\u1ec1u tr\u1ecb t\u1ea1i b\u1ec7nh vi\u1ec7n c\u1ee7a ch\u00fang t\u00f4i (m\u1eb7c d\u00f9 gi\u1edd c\u1eadu \u1ea5y \u0111\u00e3 18 tu\u1ed5i, c\u1eadu \u1ea5y s\u1ebd s\u1edbm chuy\u1ec3n \u0111\u1ebfn B\u1ec7nh vi\u1ec7n Stanford!) v\u00e0 t\u1ef1 h\u00e0o khi tham gia Scamper \u0111\u1ec3 h\u1ed7 tr\u1ee3 c\u00e1c b\u1ec7nh nh\u00e2n kh\u00e1c, \u0111\u1ed9i ng\u0169 ch\u0103m s\u00f3c c\u1ee7a m\u00ecnh v\u00e0 c\u00e1c nh\u00e0 nghi\u00ean c\u1ee9u ti\u00ean phong nh\u01b0 Ti\u1ebfn s\u0129 Porteus. Ch\u00fang ta c\u00f3 th\u1ec3 \u1edf xa nhau, nh\u01b0ng nh\u01b0 David n\u00f3i, \u201cb\u1ea1n kh\u00f4ng th\u1ec3 n\u00e0o kh\u00f4ng tham gia Scamper \u0111\u01b0\u1ee3c\u201d.<\/p>","protected":false},"excerpt":{"rendered":"<p>&nbsp; \u201cN\u1eb1m vi\u1ec7n kh\u00f4ng c\u00f2n l\u00e0 \u0111i\u1ec1u \u0111\u00e1ng s\u1ee3 v\u1edbi t\u00f4i n\u1eefa. G\u1eb7p ph\u1ea3i m\u1ed9t v\u1ea5n \u0111\u1ec1 m\u1edbi c\u0169ng kh\u00f4ng c\u00f2n \u0111\u00e1ng s\u1ee3 n\u1eefa v\u00ec n\u00f3 \u0111\u00e3 x\u1ea3y ra qu\u00e1 nhi\u1ec1u l\u1ea7n r\u1ed3i. T\u00f4i\u2026<\/p>","protected":false},"author":17,"featured_media":17743,"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":[23],"class_list":["post-15584","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-summer-scamper-heroes"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v27.3 (Yoast SEO v27.3) - https:\/\/yoast.com\/product\/yoast-seo-premium-wordpress\/ -->\n<title>Meet David, Your Summer Scamper Patient Hero - Lucile Packard Foundation for Children&#039;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=\"https:\/\/lpfch.org\/vi\/impact-stories\/meet-david-your-summer-scamper-patient-hero\/\" \/>\n<meta property=\"og:locale\" content=\"vi_VN\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Meet David, Your Summer Scamper Patient Hero\" \/>\n<meta property=\"og:description\" content=\"&nbsp; \u201cBeing in the hospital isn\u2019t scary to me. 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