{"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\/tl\/impact-stories\/stephen-and-edwards-story\/","title":{"rendered":"&quot;Ang aking mga anak na lalaki ay nagkaroon na ng epekto.&quot;"},"content":{"rendered":"<h2>Kilalanin sina Stephen at Edward mula sa Alameda County, CA.<\/h2>\n<p>Sina Stephen at Edward ay nakatira sa Hunter syndrome.<\/p>\n<p><img decoding=\"async\" src=\"https:\/\/lpfch.org\/wp-content\/uploads\/2024\/01\/_df36365.jpg\" alt=\"Stephen and Edward\" \/><\/p>\n<p>Mayroong 200-300 mga bata, halos lahat ng lalaki, na may Hunter syndrome sa US. Si Pei Wang ang ina ng dalawa sa kanila, ngayon ay edad 5 at 8 taong gulang. Sinabi niya na ang kanilang hinulaang haba ng buhay ay 10-20 taon. Ang isang sintomas ng lumalalang kondisyong ito ay ang paninigas ng mga kasukasuan. Nawalan na si Stephen ng kakayahang magbihis. (Larawan: Deanne Fitzmaurice)<\/p>\n<p>&nbsp;<\/p>\n<p><img decoding=\"async\" src=\"\/wp-content\/uploads\/wpallimport\/files\/_df36421.jpg\" alt=\"Stephen and Edward\" \/><\/p>\n<p>Ang mga hunter na lalaki ay nawawala ang isang pangunahing metabolic enzyme, na nakakaapekto sa bawat organ sa kanilang mga katawan, at nagiging sanhi ng unti-unting pagkasira ng kanilang utak. Ang Hunter syndrome ay nauugnay din sa hyperactivity. (Larawan: Deanne Fitzmaurice)<\/p>\n<p>&nbsp;<\/p>\n<p><img decoding=\"async\" src=\"\/wp-content\/uploads\/wpallimport\/files\/_df36472.jpg\" alt=\"Stephen and Edward\" \/><\/p>\n<p>Ang mga papeles para kina Stephen at Edward \u2013 para sa taong ito lamang \u2013 ay tumatagal ng isang buong drawer sa file cabinet ni Pei. Ang mga lalaki ay pumupunta sa espesyal na klase sa araw sa kanilang paaralan, at regular na tumatanggap ng occupational, physical, speech at behavioral therapies. Bukod pa rito, regular din silang bumibisita sa iba&#039;t ibang mga espesyalista upang subaybayan ang mga function ng atay, baga, puso, buto, neurolohiya, mata at pandinig. (Larawan: Deanne Fitzmaurice)<\/p>\n<p>&nbsp;<\/p>\n<p><img decoding=\"async\" src=\"\/wp-content\/uploads\/wpallimport\/files\/_df36482.jpg\" alt=\"Stephen and Edward\" \/><\/p>\n<p>Kinailangan ni Pei at ng kanyang asawa na mag-install ng maraming deadbolts sa kanilang pintuan sa harap upang maiwasan sina Stephen at Edward na tumakbo sa trapiko. Ang mga lalaki ay walang pakiramdam ng panganib, paliwanag ni Pei. (Larawan: Deanne Fitzmaurice)<\/p>\n<p>&nbsp;<\/p>\n<p><img decoding=\"async\" src=\"\/wp-content\/uploads\/wpallimport\/files\/_df36611.jpg\" alt=\"Stephen and Edward\" \/><\/p>\n<p>Si Pei at dalawa sa kanyang tatlong anak na lalaki, malapit sa kanilang tahanan sa Alameda County. Si Pei at ang kanyang asawa ay may pangatlong anak na lalaki na karaniwang lumalaki. (Larawan: Deanne Fitzmaurice)<\/p>\n<p>&nbsp;<\/p>\n<p><img decoding=\"async\" src=\"\/wp-content\/uploads\/wpallimport\/files\/_df39589.jpg\" alt=\"Stephen and Edward\" \/><\/p>\n<p>Umiiyak si Stephen bago ang appointment ng dentista sa Oakland, CA. Dahil nahihirapan siya sa mga appointment na ito, kailangang maghanap si Pei ng mga dentista na makakapagpa-anesthetize o makakapigil sa kanya, kahit na para sa karaniwang gawaing dental tulad ng paglilinis at pagpapatambal. Karaniwan, kailangan niyang maghintay ng anim na buwan o higit pa bago siya makakuha ng appointment. Dahil dito, maraming ngipin na ang natanggal ni Stephen. (Larawan: Deanne Fitzmaurice)<\/p>\n<p>&nbsp;<\/p>\n<p><img decoding=\"async\" src=\"\/wp-content\/uploads\/wpallimport\/files\/_df39632.jpg\" alt=\"Stephen and Edward\" \/><\/p>\n<p>Sina Stephen at Edward ay pumunta sa isang lingguhang paggamot sa pagpapalit ng enzyme sa Kaiser Permanente sa Oakland. Ang paggamot ay nakakatulong na mapabagal ang pag-unlad ng sakit, ngunit hindi ito isang lunas. Si Pei at ang kanyang asawa ay parehong may Ph.D sa biology. &quot;Ang dahilan sa likod ng Hunter syndrome ay talagang tapat. Ngunit dahil ito ay isang bihirang sakit, walang gaanong komersyal na interes na bumuo ng mas mahusay na paggamot.&quot; (Larawan: Deanne Fitzmaurice)<\/p>\n<p>&nbsp;<\/p>\n<p><img decoding=\"async\" src=\"\/wp-content\/uploads\/wpallimport\/files\/_df39660-2.jpg\" alt=\"Stephen and Edward\" \/><\/p>\n<p>Sa tulong ni Merry Modesto (dulong kaliwa), ang kanyang matagal nang clinical assistant, pinapakain ni Pei ang mga lalaki at pinapanatili silang naaaliw sa tatlong oras na paggamot sa pagpapalit ng enzyme. Pagkatapos pumunta sa mga appointment na ito bawat linggo sa loob ng apat na taon, naging magaling na siya sa pagsuri sa mga antas ng enzyme at mga port ng dibdib ng kanyang mga anak (isang maliit na appliance na naka-install sa ilalim ng balat na nagbibigay-daan sa pag-iniksyon ng mga gamot, o pagkuha ng dugo, nang mas madali). Siya ay nangangarap na makapagbigay ng paggamot na ito sa kanyang sariling tahanan, upang maiwasan ang mahihirap na paglalakbay sa ospital. (Larawan: Deanne Fitzmaurice)<\/p>\n<p>&nbsp;<\/p>\n<p><img decoding=\"async\" src=\"\/wp-content\/uploads\/wpallimport\/files\/_df39780-2.jpg\" alt=\"Stephen and Edward\" \/><\/p>\n<p>Hinahalikan ni Pei ang kanyang gitnang anak na si Edward. &quot;Siguro ang epekto na ginawa mo ang siyang ganap na kahulugan ng buhay,&quot; sabi ni Pei, na naging tagapagtaguyod para sa kanyang mga anak na lalaki at iba pang mga anak na may espesyal na pangangailangan. &quot;Kung iisipin mo iyon, hindi mahalaga kung ang iyong buhay ay maikli o mahaba. Ang aking mga anak na lalaki ay nagkaroon na ng epekto.&quot; (Larawan: Deanne Fitzmaurice)<\/p>\n<p>&nbsp;<\/p>\n<h2>Mapa ng pangangalaga nina Stephen at Edward<\/h2>\n<p><img decoding=\"async\" src=\"\/wp-content\/uploads\/wpallimport\/files\/_df39753_crop.jpg\" alt=\"\" \/><\/p>\n<p>Ang \u201cmap ng pangangalaga\u201d nina Stephen at Edward, na naglalarawan sa kumplikadong web ng pangangalagang medikal at saklaw, pati na rin ang mga serbisyong pang-edukasyon at suporta na kailangan para sa mga batang may kumplikadong medikal at kanilang mga pamilya.<\/p>","protected":false},"excerpt":{"rendered":"<p>Kilalanin sina Stephen at Edward mula sa Alameda County, CA. Sina Stephen at Edward ay nakatira sa Hunter syndrome. Mayroong 200-300 mga bata, halos lahat ng lalaki, na may Hunter syndrome\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":"<!-- 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>&quot;My boys have already made an impact.&quot; - 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\/stephen-and-edwards-story\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"&quot;My boys have already made an impact.&quot;\" \/>\n<meta property=\"og:description\" content=\"Meet Stephen and Edward from Alameda County, CA. 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