Mālama iā Ashley: He aha ke kumukūʻai o ke ola? | Adelaide I kēia manawa -g-icon-hewa ka lā ao nav_small_right nav_small_right nav_small_right nav_small_right nav_small_right nav_small_right nav_small_right nav_small_right nav_small_right 0A0871E9-1636-49F4-9041-2E36E2BB5333

ʻElima wale nō ona makahiki a ʻaʻole hiki iā ia ke haʻi i ka maʻi make.
ʻO ka lāʻau lapaʻau wale nō e hiki ke hoʻopakele iā ia he $240,000 i ka makahiki, akā ʻo wai ka mea e uku?
He kaua nawaliwali, niho niho, ilio-
He keiki liʻiliʻi kūikawā makemake e ola.
ʻaneʻane hoʻolei ʻo Grey i ka ʻūlū o ka puka mua. “Aia ʻoe ma ʻaneʻi!
E nana, ua nalowale ko'u niho mua.
\" Lele ʻo ia mai kona wāwae ʻākau a i kona wāwae hema.
Ua ʻakaʻaka ʻo ia me he mea lā ua ʻakaʻaka ʻo ia i ʻelua manawa.
ʻAʻole i liʻuliʻu ma mua, ua paʻi ʻo ia i kiʻi me kahi hui hoʻohālike o nā keiki --
Ua loaʻa iā lākou ʻekolu manawa i ke kolu kiʻi i paʻi ʻia no nā keiki ʻē aʻe.
ʻO Ashley ia.
ʻO kona mau maka uliuli nui ka hope loa.
He ʻokoʻa ʻo Ashley mai nā ʻelima ʻē aʻe. makahiki makahiki.
Ua loaʻa ʻo ia i kahi maʻi make kakaʻikahi a hiki ʻole ke hoʻōla.
I ka makahiki mua o kona ola ʻana, ʻaneʻane make ʻo ia iā ia.
Aia ʻo ia i kēia manawa-
Ma ke ala o ka hale liʻiliʻi i hoʻolimalima kona mau mākua, e lele ana i ka lewa --
Ma muli wale nō o ke aloha o kahi hui lāʻau lapaʻau.
Lawe ʻo ia i nā lāʻau lapaʻau ʻaʻole e kālā ke aupuni federal.
ʻO ka 300 mg i loaʻa iā ia i kēlā me kēia pule ʻelua ke kumu kūʻai o kahi kaʻa ʻohana.
$240,000 i ka makahiki.
He olakino ʻo ia me ia.
Me ka ʻole, e make ʻo ia i ka maʻi.
He maʻalahi kēlā.
Akā ʻo ka ʻoiaʻiʻo weliweli ʻo ia ka wā e hiki mai ana ʻo Ashley i ka manaʻo maikaʻi o nā multinationals.
A i ʻole ka peni bureaucratic a me ke kunou o ka mea kālai'āina.
No laila, i kēlā me kēia manawa e lawe ai ʻo ia i ke gula wai, pule mālie kona mau mākua no ka mahalo.
ʻElua mau pule i koe no ke keiki makaʻu ʻole.
ʻO ka moena haʻahaʻa ʻo Ashley's.
Ua hui ʻo ia i kahi lumi moe liʻiliʻi me kona mau kaikunāne ʻelua.
ʻO Baby Ollie ma kahi moe liʻiliʻi ma ke kihi
He wahi moe ko Lachlan.
E waiho ana kekahi pale lole Elmo ma luna o kahi moe o Ashley.
Ua puka mai ka pākeʻe i ka wā i loaʻa ai ka mea wahaheʻe.
Hiki paha ke 40C ma waho-
I kekahi lā ma Melbourne hikina, e kauo ʻo ia iā ia i ka lumi hoʻomaha.
Piʻi ʻia ma luna o ka sofa.
ʻO ia ka hōʻailona mua i hoʻopaʻa hou ʻia ke keiki a Jason lāua ʻo Kerry Gray i ka haukapila.
He hemahema ka laau lapaau ana i lawe ai.
He maʻi maʻi nui ʻo ia a inā loaʻa ʻo ia i ke kuni, e hele pololei ʻo ia i ka haukapila e nānā a hoʻohana i nā lāʻau antibiotic he nui.
Kāohi ʻo Ecullizumab i kahi ʻāpana o ka ʻōnaehana pale mai ka hana kūʻē i ka lolo a me ke koko.
ʻAʻole hiki iā lākou ke lawe i ka pilikia i ka wela.
Me ia naʻe, hiki iā Ashley ke ʻelemakule i kēia manawa.
ʻAʻole hiki i ka noʻonoʻo akamai ke loaʻa kahi ala e mālama ai i ka aHUS, akā ʻo kēia ʻano hana kūikawā e hoʻomalu maikaʻi i kona ʻōnaehana pale.
ʻAʻole kālā nā mana o Australia i ka ecullizumab no aHUS.
I hoʻokahi makahiki i hala aku nei, ua hōʻole ʻia ʻo ia no ka hoʻokomo ʻana i ka papahana lāʻau ola ola o Australia.
ʻAʻole ia e hele i nā kūlana koʻikoʻi.
Hiki ke hana hou kēia i ka wā e noʻonoʻo hou ai kahi papa o ka poʻe loea i ka mahina aʻe inā e ʻōlelo ʻia ke Kuhina Ola e ʻae.
Inā pēlā, hiki iā ia ke hoʻololi i ke ola o 70 Australians.
ʻAʻohe mea hōʻoiaʻiʻo e hoʻomau ʻo Alexion i ke kālā no ka mālama ʻana iā Ashley.
Ua hōʻole hou aku ka poʻe pilikua honua i nā noi he nui mai nā maʻi maʻi o Australia i aloha i ka pono no lākou.
Ke kali nei lākou i ke aupuni pekelala e hoʻomaka e uku.
Ke kali lākou, nāwaliwali a nāwaliwali nā kānaka.
15 knm hohonu ma waho o ka puka aniani keʻena constate ma Steve spinto.
ʻO ke kūlana ma lalo o ka hau a me ka Blizzard he 6C.
ʻO kahi keiki liʻiliʻi, nāna i kōkua i ka hoʻololi ʻana i kona ola, ke holo nei i kēia manawa ma kahi o 18,000 km m ka mamao me ka pōkole a me ka pālule.
ʻO Ashley kekahi o nā haneli haneli o ka honua.
Hana maikaʻi ka lāʻau lapaʻau a ʻo nā aupuni ma 40 mau ʻāina e hāʻawi kālā i nā maʻi maʻi aHUS.
Kapa kekahi iā Steve Jobs ma ka honua biotech.
Akā no nā makahiki, ʻo ka hui lāʻau lapaʻau āna i hana ai
He hiki ʻole paha iā $1 biliona.
ʻO kēia ka nui o ka ecullizumab i hoʻokomo.
I nā makahiki 1990, ua loaʻa i nā mea noiʻi ma ke Kulanui ʻo Yale kahi ala kūpono e hoʻōki ai i ka ʻōnaehana pale mai ka laha ʻana, a huli lākou i ko lākou manaʻo i ka mālama ʻana i nā maʻi nui.
Me he mea lā ua hala.
Ma hope o ʻelua makahiki a me ka hapa o ke kūkulu ʻana i kahi keʻena liʻiliʻi, ʻaʻohe mea e hōʻike ʻia.
He ʻumi makahiki ma hope mai, he lanakila wale nō. Ua nānā ʻino.
Akā, ua koi ʻia kahi loea koko Pelekane e makemake ʻo ia e hoʻohana i kahi super
ʻO nā maʻi autoimmune kakaʻikahi ua uku hope loa.
Ma kahi kokoke i ʻumi makahiki ma hope o ka hoʻomaka ʻana o Alexion, ua hiki mai ka holomua.
Hoʻomanaʻo maopopo loa ʻo Squinto.
Ua hoʻopau ʻo ia i kāna ʻahaʻaina hope me kāna wahine. Ua kani ke kelepona.
He kelepona ia mai Beretania mai.
Ua puka mai ka hopena.
Ke hoʻomaikaʻi nei nā maʻi 11 i ka hoʻokolokolo.
Aia kekahi maʻi nui ma nā kaʻa a ua huli ka hui Alexion i ko lākou manaʻo i kahi maʻi kakaʻikahi.
Ua hoʻomaka lākou e hoʻohana iā ia i nā poʻe maʻi me Ashley Syndrome.
He hana maikaʻi loa.
Ua noʻonoʻo ʻo Squinto e kūʻai aku i ka hui no kāna mau ʻoi aku ka maikaʻi, akā ʻo ia a me kāna mau hoa hana
Ua hoʻoholo ka mea hoʻokumu ʻo Leonard Bell e hoʻopau loa i ka pilikia.
\"ʻAʻole mākou he lima maoli-ia-
\"ʻO ia ke ʻano o ke kanaka," wahi āna. \"
I nā makahiki e hiki mai ana, ma hope o ka ʻae ʻia ʻana no ka mālama ʻana i ka aHUS, ua kāhea nā kauka mai ka honua holoʻokoʻa.
Ke noi nei kekahi mau ʻohana i nā hui e ʻae iā lākou e komo i kā lākou papahana aloha.
ʻAʻohe mea hiki ke loaʻa.
ʻO Joshua Cosman, he loea maʻi ma ka Royal Children's Hospital, ʻo ia kekahi o lākou.
Ua hui mua ʻo ia me Ashley ma 2009, ua maʻi nui ʻo ia.
He moho ʻo Ashley no ka lāʻau ecullizumab (a i ʻole Soliris no ke kūʻai ʻia ʻana) no ka mea hoʻomau ʻo ia i ka hoʻomaka ʻana a, ʻoiai kā lākou hoʻoikaika ʻana, ua paʻa hou ʻo ia i ka hōʻole ʻana o ka puʻupaʻa.
Ua hoʻomanaʻo ʻo Kausman: \"Aia ʻo ia i kahi kūlana koʻikoʻi o ka maʻi.
Akā loaʻa iā mākou ka manawa e hoʻohuli ai me ecullizumab.
\"Ma loko o kekahi mau pule ma hope o ka hoʻomaka ʻana i ka lāʻau lapaʻau, ua maikaʻi ke kūlana o Ashley.
Ma mua o ka makahiki hou, ua holo ka ʻīlio ʻīlio Labrador ʻeleʻele, ʻo Disel, ma ka wāwae o Ashley ma ka papa hope.
Hāʻawi nā keiki iā ia i makana no ka Kalikimaka.
Lele ke keiki a puni iā ia, he makemake no Santa Claus.
Aia kēia ma luna o kāna papa inoa Kalikimaka.
I ka wā i hoʻāʻo ai ʻo Ashley e haʻi i ka inoa o kona maʻi --
ʻO ka maʻi o ka lysophanide atypical
Nahu ka diesel i kona kuʻekuʻe wāwae.
Ua paʻi ʻo ia i ka fal a ʻōlelo ʻo ia, "he anemia ma ka mimi.
\"He hooikaika wiwo ole, he hoao lapaau no ke kanaka uuku.
Ua hana maikaʻi ʻo ia i kekahi mau makahiki i hala.
Ua poina iā ia he hōʻailona maikaʻi.
Ua lōʻihi loa. ua lilo keia ohana i kona mai.
ʻO Māmā, makua kāne a me ʻelima mau keiki, ʻo ia hoʻi nā kaikuahine ʻo Tahlia a me nā kaikuahine ʻo Mikayla, e noho pū ana me nā keiki i loko o ka lumi ma ka lobby.
ʻAʻole kamaʻilio hou ʻia kēia maʻi unpronountable.
I kēia manawa hiki iā Kerri lāua ʻo Jason () ke waiwai i nā mea maʻalahi. A hana lākou.
He lā ʻohana ma kahakai me nā ʻīlio.
Hoʻomoana ma RV Park.
ʻO ka pā kua i piha i ka mauʻu ʻōmaʻomaʻo.
Ka walaʻau o nā wāwae liʻiliʻi a me ke kani.
ʻO ke kowali i hope a me kekahi keiki a i ʻole.
Ua ʻakaʻaka ʻo Kerri a hoʻolauleʻa i ka lā hānau o kāna keiki me ka waimaka.
ʻElima i hala, akā, ʻaʻole i pau ka nani o ia mau hoʻolauleʻa.
He paʻakikī ka hoʻomaka ʻana o kona ola a ʻaʻole ʻo ia i manaʻo e ʻike ʻo ia iā ia no ka manawa mua.
No nā Australia e like me Ashley, ua hoʻololi ka ʻōlelo i nā mea āpau. “Ma ke ʻano nui.
\"Ma hope o ka loiloi ʻana, ua hoʻokomo ʻia i loko o ka maʻamau 4 o ka papahana lāʻau ola ola ma 2009.
He hoʻololi nui kēia.
Manaʻo ka poʻe me nā maʻi kakaʻikahi he mea kōkua ia i ka paipai ʻana i ka papahana --
Laau ola ola
ʻAʻole hiki iā lākou ke hiki.
ʻO nā ʻōlelo hoʻohiki a pau akā ʻaʻohe hāʻawi.
Ke kuhikuhi nei ka Standard 4 i kēia manawa e hiki ke ʻae ʻia kahi lāʻau lapaʻau e ka papahana, a ʻo ke Kōmike Aʻoaʻo Pōmaikaʻi Lapaʻau pono e \" wānana e hoʻolōʻihi ʻia ke ola o ka mea maʻi ma muli o nā hopena pololei o ka hoʻohana ʻana i ka lāʻau.
Ma ke kahua o ka lāʻau lapaʻau, ʻo ke koʻikoʻi nā mea a pau.
\"Hoʻonui nui i ke ola\" 'o ia hoʻi ʻo Megan Fox, nona ka maʻi kakaʻikahi a manaʻo ʻo ia ka huaʻōlelo e hoʻohaʻahaʻa i ke kaʻina hana. Pohihihi hou aku.
ʻO ia ke kuleana o ka ikaika e ulu nei no ka hoʻolaha maʻi maʻi --
He kani kakaʻikahi ma Australia.
ʻO Ashley hoʻokahi wale nō kanaka i pani ʻia e kāna hui.
Akā i kēia manawa ua ʻoi aku ka laki ma mua o ka hapa nui o nā kānaka.
ʻAʻohe kānalua ʻo kāna lāʻau manuahi e hāʻawi iā ia i kahi ola lōʻihi.
ʻOi aku ka lōʻihi.
ʻO ia ka pēpē maʻalahi loa i ka wā mua.
Moe mau a ʻai ʻo ia e like me kāna pono.
Ka hauʻoli o ka makuahine hana.
Ua kūkulu ʻia ka manaʻo o ka makuahine o Kerri ma ka paia o ko lākou home
I ka emi ʻana o nā keiki ma lalo o ʻelima mahina o ka pule, ua hana ʻo ia i nā poni me nā lima a me nā wāwae o kēlā me kēia.
ʻOiai ka nui o nā moa, ua pau nā mea a pau.
ʻElua mahina ma hope o ka hopu ʻia ʻana o nā wāwae a me nā lima o Ashley i ka hamo, ua pilikia ʻo ia.
Ua hoʻomaka kekahi mea i ke ono o ka manaʻo o Kerri i ka pō Sābati, a lawe ʻo ia iā ia i kahi keʻena olakino hou e hopohopo no kahi pilikia koʻikoʻi.
"Ua noi mai ʻo Jason iaʻu e hāʻawi i ka hanu a waiho iā ia e moe.
Noho ʻo kāna kāne ma ka ʻaoʻao o ka sofa a ʻakaʻaka me ka hilahila.
Ua manaʻo ke kauka lapaʻau he anemia kona.
Ua noi lākou iā ia e lawe iā ia i ke keʻena pilikia ma ka Halemai Box Hill.
Ua piha ka lumi kūkākūkā me nā limahana lapaʻau.
Chaos, kamaʻilio wikiwiki, hoʻokomo i nā kulu, nā kahu hānai e holo a puni me nā pā kila kila piha i nā nila a me nā paipu.
A me na maka o ke aloha.
\" ʻO kēia ka manawa mua aʻu i hele ai i \'Oh, s. .
He koʻikoʻi kēia, \" wahi a Kerri.
\"Ua hoʻouna lākou iā ia i ka Halemaʻi o nā keiki aliʻi i hoʻokahi hola --
I ka manawa like, ke hopohopo nei au i nā mea liʻiliʻi e like me kaʻu e mālama ai i ka stroller i koʻu wā i loko o kahi kaʻa kaʻa.
Makemake ʻo ia e ʻike i ka waiwai ʻole o kēia mau mea.
Ua lilo ʻo AHUS i nā mea a pau i ka makahiki aʻe.
I ka manawa i hōʻoia ʻia ai ka maʻi maʻi, ua loaʻa iā Ashley ka mālama maʻamau no nā maʻi aHUS.
Akā he hapa wale nō.
Ua loaʻa iā ia ka dialysis a me ka hoʻololi plasma.
Akā, ua emi kāna hana kīkī.
Me he mea lā ʻaʻole e ulu ʻo Ashley.
ʻO ka mea nui loa iā ia, ʻo ia ka nui o kā lāua uku inā e uku ʻo lāua me Jason no ka lāʻau kilokilo e mālama ai iā Ashley.
He mea hiki ole keia.
ʻO kēia ka lāʻau kūʻai nui loa ma ka Honua.
ʻOiai he pipiʻi ke kumukūʻai, pono e noʻonoʻo e nalowale kēlā me kēia mea ʻauhau ma Australia i 1 paona wale nō.
No ka mālama ʻana iā Ashley, ʻeiwa keneta i ka makahiki.
Inā loaʻa i kēlā me kēia mea maʻi aHUS kahi makana $2.
Ke uku nui nei kēlā me kēia mea ʻauhau i kēlā me kēia makahiki.
No ka mea ʻaʻole ia e hana no kēlā me kēia maʻi, ʻoi aku ka liʻiliʻi. ʻAʻole nui.
Akā no kēia poʻe, pono ko lākou ola.
Ua kapaia ka laau makua ole.
He kumukūʻai maʻamau lākou no ka mea ua hoʻomohala ʻia lākou no nā mākeke ultra-niche
ʻO nā maʻi me nā maʻi kakaʻikahi
ʻO ia ke kumu e maʻalahi ai ka ʻōnaehana olakino lehulehu.
No laila he kakaikahi ka poʻe pono e hoʻohana iā lākou.
Ua ʻōlelo ʻo Meghan Fox, ʻoiai ua hana ka ʻōnaehana olakino o Australia i nā noiʻi lāʻau lapaʻau e pili ana i nā maʻi liʻiliʻi, ʻaʻole ia e kākoʻo i kā lākou kūleʻa i ka wā i puka mai ai nā hopena.
He hōʻailona kēia nona ka manaʻo ʻia ʻana o kēia pūʻulu maʻi liʻiliʻi i ka pae kiʻekiʻe loa o ka heluna papa lua.
Ua pau kona manaolana i ka makahiki i hala.
Ua hoʻolaha ʻia ka loiloi o ka LSDP i hoʻokahi mahina ma mua o ke koho balota federal.
Ma kahi o 20 poʻe i hele i kahi kelepona kūkā.
ʻO nā luna ʻoihana a me nā ʻelele o nā maʻi kakaʻikahi, nā hui lāʻau lapaʻau a me nā kauka.
Aia kahi leo makaʻala akā manaʻolana ma kēia laina.
Akā ʻaʻohe mea mai ia manawa.
ʻAʻohe leka uila, ʻaʻohe kelepona.
Ke lana nei ka manao o Fookes.
\" Aloha au i nā manaʻo. Pono mākou.
\"Pono ʻo ia i lālā o ka hui loiloi.
\"Ke hopohopo nei mākou e ulu aʻe ka LSDP.
\"ʻO ka ʻoi loa o Australia i ka noiʻi lapaʻau me he mea lā ua hoʻokomo i ke kālā no nā maʻi kakaʻikahi i ka pilikia.
ʻAʻole pinepine nā lāʻau lapaʻau makua ʻole i nā hoʻokolohua ma nā papahana no ka mea liʻiliʻi loa ka heluna o nā maʻi maʻi ʻaʻole pinepine lākou e hoʻokō i nā pono ʻelua paʻakikī.
Nā hoʻokolohua makapō o nā lāʻau maʻi maʻamau.
Ua ʻōlelo ke kauka inā ʻaʻole hoʻolei ka pēpē i waho me ka wai ʻauʻau, e hoʻokokoke a kokoke.
A huikau ʻo Fookes.
\"No kekahi kumu, pono nā poʻe maʻi me nā maʻi kakaʻikahi e pale i ko lākou ola.
ʻAʻole maʻi ka poʻe e like me Ashley i ka ʻai nui ʻana, ka puhi ʻana, a i ʻole ka lawe ʻana i nā lāʻau lapaʻau.
Ua hānau ʻia lākou me kēia maʻi.
Akā ma ke ʻano o ke aupuni federal, he pōʻino wale nō kēia \".
I ka lā a lāua i ʻike ai e make paha ʻo Ashley, ua hōʻea ʻo ia i ka haukapila mai ka hana a Kelon.
No ke aha ʻaʻole i loaʻa iā ia ka tiketi holo wikiwiki? he laki maikai.
Noho ʻo ia ma ka ʻaoʻao o Kerri ma ka Halemai o nā keiki a ua wehewehe ʻo Kausman i nā hopena hōʻike.
I loko o kēlā lumi, ua haʻi ʻo Kausman iā lākou i kekahi mea e like me kēia: He ʻāpana o ka ʻōnaehana pale o Ashley --
\" Hoʻohui \"-
Hoʻokumu i ka hana hoʻomalu ʻole.
Pehea la lakou i ike ole ai?
He kīnā genetic paha.
Hoʻopili ia i nā kīʻaha koko, hana i nā platelets e hana i kahi clot, a kau i ke kaomi kino i kāna oxygen.
Lawe i nā ʻulaʻula koko e māhele ana.
Pono ʻo ia i ka dialysis.
ʻAʻohe lāʻau.
He mea make ka ma'i.
Hiki i kā lāua keiki ke make.
Akā ʻo Jason Heard he haunaele.
ʻAʻohe o kēia i kūpono.
ʻAʻole e ʻōlelo ʻia kēia mau ʻōlelo.
"Ke hoʻomanaʻo nei au i ka noho ʻana ma laila me ke kauka a huli aʻe iā Kerri a nīnau iā ia," Kez, he aha ka mea i hana ʻia, "uē wale ʻo ia me ka ʻōlelo ʻana," ʻAʻole wau i ʻike, jase.
Ua maopopo iaʻu he koʻikoʻi.
I kēlā lā, ua loiloi ʻia ke keiki maʻi koʻikoʻi e ka Hematology, ka maʻi ʻokiʻoki, ka immunologist, ke kauā a me ka pediatrician.
Ma mua o ka hola ʻeono P. M. , e hana ana ʻo ia i ka ʻokiʻoki no ka hoʻomākaukau ʻana no ka dialysis.
ʻO ka uku no ka hāʻule ʻana o ke kīkī
Hana ʻo Jason no kahi hui moena i hiki iā ia ke mālama i kā lāua mau keiki ʻekolu ma ka home.
Ua hānau ʻia ʻo Ollie i ʻekolu makahiki ma hope.
Ua noho ʻo Kerri lāua ʻo Ashley i hoʻokahi makahiki i ka haukapila.
Ua hana ʻo ia ma ka autopilot no ʻelua pule i ka manawa, a laila e ninini ʻia i loko o ka puʻu no kahi lā, e ʻohi hou a hoʻihoʻi i ka autopilot.
Ua like ʻo Jason me kahi makua hoʻokahi i nā keiki ʻē aʻe.
No kekahi manawa, aia ʻo ia ma kahi mamao mai ke keiki maʻi i loko o ka loko wai --maka uliuli.
"I loko o koʻu puʻuwai, manaʻo wau ua hoʻoholo wau inā ʻaʻole wau e hoʻokokoke. . .
Ua lulu ʻo Jason, "e maʻalahi ke nalowale iā ia.
\"ʻAʻole maikaʻi ka ʻikepili no ke aupuni. Mai ka makahiki 2009 —
I ka hoʻokomo ʻana i ka \"nui --
Hoʻokahi wale nō hui maʻi hou i hoʻohui ʻia i ka papa inoa o nā mea i loaʻa i ka papahana.
I kēlā me kēia hihia, ua hōʻea ka hui i 80 ma o ke kaʻina hana ʻae.
Ua hoʻohui pū ʻia kekahi lāʻau lapaʻau, akā he mea hou kēia no ka maʻi i hōʻike ʻia ma mua o 2009.
Ua ʻōlelo ʻo Dr. Ua hōʻole ʻo Suzanne Hill, ka luna o ke Kōmike Aʻoaʻo Welfare pharmaceutical, e ninaninau ʻia ma ka hoʻolālā lāʻau ola ola.
Ua pane akahele ʻo ia ʻaʻole kūpono e pane i nā nīnau maʻamau me ecullizumab --for-
E kali ana i ka olelo hooholo a ka aHUS
Ua haʻi aku kekahi ʻelele maʻi ʻaʻole i kapa ʻia ʻo ia, i ka Herald Sun he mea paʻakikī loa ka hui ʻana me Hill.
\" Me he mea lā ua minamina ʻo ia iā mākou i kona lohe ʻana i kā mākou ʻōlelo.
Akā i ka hopena, ʻōlelo ʻo ia, "pono ʻoe e kamaʻilio me kēlā poʻe kālai'āina, ʻaʻole iaʻu. \"
Manaʻo ʻo Kerri Grey, nāna i hoʻokumu i ka hui kākoʻo aHUS ma Australia, hiki i ke aupuni ke hoʻolilo kālā hou aku, akā ʻaʻole.
Ua uhi ʻia ka ʻikepili kālā e nā papahana ākea.
\"He koi ka papahana --
E hoʻokele e like me ka mea e pono ai, "Ua ʻōlelo ʻo Polofesa Chris Baggoley, ka luna lapaʻau nui, i ka leka uila i pane i kahi noi ninaninau.
ʻO ka manaʻo o ka papahana ʻo ka ʻae ʻana i ke komo ʻana i nā maʻi lapaʻau i hoʻopaʻa ʻia ʻaʻole hiki ke hala i ke kumukūʻai o ka hoʻāʻo ʻana i ka pōmaikaʻi papahana Pharmaceutical Benefits.
Ua ʻōlelo ʻo Fookes ua hoʻoheheʻe ʻia ka pahuhopu nui i ka manawa.
\"No ka nui o na laau lapaau e lapaau ai i na ma'i kakaikahi, ua oi aku ka paakiki o ka papa inoa ia lakou," wahi ana. \".
"Manaʻo wau makemake lākou e hoʻolōʻihi i ka papahana, akā ua pāpā lākou iā ia ma kāna ala.
Ua ʻike kona mau mākua i kona kokoke ʻana i ka pali.
Ma mua o ka Kalikimaka, ua launa pupule ʻo Kerri me kahi makuahine Queensland.
Lohe pinepine ʻo ia i ka moʻolelo a Ashley me ka ʻole ecullizumab.
E moe ana ʻo Bianca Scott ma luna o kahi moena haukapila ma Gold Coast.
Hana ʻo ia i ka dialysis no nā hola o ka lā e hoʻoponopono ai i kona mau puʻupaʻa hemahema.
Loaʻa iā ia nā pani plasma e hoʻāʻo nei e pani i kāna ʻōnaehana pale.
ʻAʻole hana ka lāʻau lapaʻau.
ʻEkolu pule aku nei, ua hoʻolohe kona makuahine ʻo Tami Hamawi i kāna kaikamahine.
Ua piha kona māmā i ke ea i kona hiamoe ʻana.
ʻO ka mea hope loa āna i manaʻo ai i kēlā pō, ʻo ia nō paha ka nalowale ʻana o kāna keiki hoʻokahi.
He aHUS ko Bianca i kona wā kamaliʻi, akā ua maʻalahi koke.
Ke nānā nei i hope i kekahi o kāna mau kiʻi hoʻonaʻauao ma ʻOkakopa, ua haʻihaʻi kona nānā ʻana a ua pena nani ʻia.
ʻO ka hoʻomaka kēia o kona emi wikiwiki ʻana.
Loaʻa kēia maʻi i ka ʻohana Bianca.
Ua ʻike ʻia kekahi mau ʻohana i make i ka maʻi ʻaʻai i nā makahiki i hala aku nei e ka aHUS.
ʻAʻole hiki i nā keiki ke hiki iā Ecullizumab.
Ua noi ʻo ia iā Alexion no ka uku hoʻemi akā hōʻole ʻo ia.
Ua haʻi aku ka loea ʻākena iā Bianca he ʻelua mahina ma mua o ka hiki ʻole ke hoʻihoʻi ʻia ka pōʻino o kona puʻupaʻa.
Ke hoʻāʻo nei ʻo ia e ʻimi i mau tausani kālā no ke ola o kāna kaikamahine.
Manaʻo ka poʻe loea, lohi ka poʻe kālai'āina, akā makemake nā keiki i kāna mau paheʻe.
He manaʻo maikaʻi nō ʻo Tammy.
Manaʻolana ʻo ia ʻo Bianca ka mea mua o kona ʻohana e uhaʻi i ka hōʻino o aHUS.
Akā, ua pau kona manawa.
Aia ka manaolana.
ʻO nā pana ma ke alo a me ke kihi o ke ala o ka haukapila o nā keiki aliʻi.
I ka loaʻa hou ʻana o kona makuahine iā ia, e hilinaʻi nui ana ʻo ia, e huki ana i kona lehelehe haʻahaʻa a hōʻike i ka hakahaka o kona mau niho i ka mea hoʻomaʻemaʻe i kulou iho e kamaʻilio.
Ua loaʻa iā ia he $5.
Aia kekahi mea wehe ma ka ʻaoʻao.
He $10 wale nō i ka pule.
Ua ʻike nā limahana RCH i ka hāʻule ʻana o Ashley i loko o ka lua me kona maʻi, ka mea nāna i hoʻokumu i ka invasive therapy, a laila hoʻihoʻi hou me kāna $9000 --a-dose lāʻau.
Pumehana ka kipa ʻana i ka mōʻī niho i kā lākou maʻi liʻiliʻi.
Pono nā keiki e hoʻolauleʻa i kēia mau mea liʻiliʻi.
Ua ʻōlelo kekahi kahu hānai inā loaʻa iā Ashley kahi infusion i kēlā me kēia pule ʻelua, makemake lākou e hoʻopaʻa inoa ʻia.
ʻAʻohe haunaele.
Ua minoʻaka ʻo ia T-
ʻO ka pālule, e hoʻokuʻi ka kulu i kona portacath, ma lalo pono o ka ʻili ma ka ʻaoʻao hema o kona puʻuwai.
ʻAʻole ʻo ia i ʻike nui i kona maʻi.
ʻO kāna "lāʻau lapaʻau kūikawā" he ʻāpana o ke ola, e like me ka ʻai ʻana i nā lau ʻai no ka ʻaina ahiahi a me ka holoi ʻana i kou niho.
ʻAʻole ʻo ia i ʻike i ka pili ʻana o kona mau mākua i ka nalowale ʻana iā ia.
ʻAʻole ʻike ʻo ia i ka nui o kona ola. ʻAʻole pono ʻo ia.
Akā, ua hiamoe ʻo Ashley Gray ma kona noho kaʻa i kona hoʻi ʻana i ka home mai ka haukapila.
Huli kona poʻo ma kekahi ʻaoʻao.
I kona wā i nui ai, ua moe ʻo ia e lilo i iʻa, he ʻīlio Iping a me nā punawai Slinky.
A pehea ʻo ia e hoʻolilo ai i $10 i ka waiwai