{"id":18271,"date":"2024-08-26T17:53:22","date_gmt":"2024-08-26T17:53:22","guid":{"rendered":"https:\/\/lpfch.org\/?p=18271"},"modified":"2025-05-22T21:18:59","modified_gmt":"2025-05-22T21:18:59","slug":"scooby-doo-fan-donut-snacker-hunter-syndrome-ambassador","status":"publish","type":"post","link":"http:\/\/lpfch.org\/tl\/impact-stories\/scooby-doo-fan-donut-snacker-hunter-syndrome-ambassador\/","title":{"rendered":"Scooby-Doo Fan, Donut Snacker, at Hunter Syndrome Ambassador"},"content":{"rendered":"<p><span data-contrast=\"auto\">Ang labindalawang taong gulang na si Aiden ay mahilig sa soccer, paglalakad sa gabi, paglangoy, panonood ng mga pelikula, at pagkain ng mga donut. Nasisiyahan siyang pumasok sa paaralan at ang sentro ng uniberso para sa kanyang ina, si Danae. Mas maraming oras din ang ginugol ni Aiden sa ospital namin na hindi niya mabilang.\u00a0<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:0,&quot;335559740&quot;:240}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">Noong sanggol pa si Aiden, na-diagnose siya na may Hunter Syndrome, isang bihirang genetic na kondisyon kung saan hindi masira ng kanyang katawan ang mga molekula ng asukal. Sa paglipas ng panahon, ang mga asukal ay naipon sa kanyang katawan at nakakaapekto sa maraming aspeto ng kanyang buhay. Dati ay aktibo at madaldal na bata, ngayon si Aiden ay may limitadong kadaliang kumilos at gumagamit ng isang nagsasalita upang makipag-usap sa kanyang mga kaibigan at pamilya.\u00a0<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:0,&quot;335559740&quot;:240}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">Sa kasalukuyan ay walang lunas para sa Hunter Syndrome. Upang makatulong na mapabagal ang pag-unlad ng kanyang kondisyon, gumugugol sina Aiden at Danae ng anim na oras bawat linggo sa aming infusion center. Si Aiden ay tumatanggap ng isang dosis ng mga enzyme\u2014isang paggamot na binuo sa pamamagitan ng pananaliksik na isinagawa sa Stanford School of Medicine. <\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:0,&quot;335559740&quot;:240}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">Kahit na bihira ang kalagayan ni Aiden, hindi siya ang una sa kanyang pamilya na nakasama nito. Nakalulungkot, ang tiyuhin ni Aiden, si Angel, ay namatay sa Hunter Syndrome sa edad na 17. Ang legacy ni Angel ay noong nabubuhay siya, lumahok siya sa isang klinikal na pagsubok sa Packard Children&#039;s na tumulong sa pagbuo ng paggamot na natatanggap ngayon ni Aiden. Umaasa sina Danae at Aiden na ang patuloy na pagsasaliksik ay makapagbibigay sa kanila ng higit pang mga pagkakataon sa hinaharap na patuloy na tumakbo sa dalampasigan sa ilalim ng mainit na araw at gumawa ng mas maraming mahahalagang alaala.\u00a0<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:0,&quot;335559740&quot;:240}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">Tinitiyak ng iyong suporta sa Lucile Packard Children&#039;s Hospital Stanford at sa mga programang pangkalusugan ng bata sa Stanford School of Medicine na ang mga batang tulad ni Aiden ay makakatanggap ng pambihirang pangangalaga ngayon at ang pananaliksik sa kanilang mga kondisyon ay sumusulong patungo sa mas mahusay na mga paggamot bukas.\u00a0<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:0,&quot;335559740&quot;:240}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">&quot;Gusto kong magpasalamat sa lahat ng mga mananaliksik at mga donor para sa lahat ng pagsusumikap na ginagawa mo upang makatulong na panatilihing lumiwanag ang apoy ng pag-asa para sa mga pamilyang tulad ko,&quot; sabi ni Danae.\u00a0<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:0,&quot;335559740&quot;:240}\">\u00a0<\/span><\/p>","protected":false},"excerpt":{"rendered":"<p>Ang labindalawang taong gulang na si Aiden ay mahilig sa soccer, paglalakad sa gabi, paglangoy, panonood ng mga pelikula, at pagkain ng mga donut. Nasisiyahan siyang pumasok sa paaralan at ang sentro ng sansinukob para sa\u2026<\/p>","protected":false},"author":7,"featured_media":18281,"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-18271","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-summer-scamper-heroes","engagement_type-summer-scamper"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v27.2 (Yoast SEO v27.2) - https:\/\/yoast.com\/product\/yoast-seo-premium-wordpress\/ -->\n<title>Scooby-Doo Fan, Donut Snacker, and Hunter Syndrome Ambassador - 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=\"http:\/\/lpfch.org\/tl\/impact-stories\/scooby-doo-fan-donut-snacker-hunter-syndrome-ambassador\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Scooby-Doo Fan, Donut Snacker, and Hunter Syndrome Ambassador\" \/>\n<meta property=\"og:description\" content=\"Twelve-year-old Aiden loves soccer, evening walks, swimming, watching movies, and eating donuts. 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