Nicholas (maʻi sickle cell)

Ua ʻike ʻia ʻo Nicholas me ka maʻi maʻi sickle ma hope koke iho o kona hānau ʻia ʻana. Ua ʻeha ʻo ia i ka maʻi maʻi wawae ma ke ʻano he pēpē ("Uē a uē nui ʻo ia ma muli o ka ʻeha o kona mau lima a me kona mau wāwae," hoʻomanaʻo i kona makuahine, ʻo Bridget) a lawe ʻia kāna gallbladder a me kāna iwi i ka makahiki 5. Penicillin, hydroxyurea a ua kōkua nā lāʻau ʻē aʻe iā ia a me kona ʻohana e mālama i ka maʻi a me nā pilikia ʻehaʻeha loa i hiki ke hopena i ka haukapila. I kēia manawa 15 a me kahi haumāna hanohano ma ke kula, hauʻoli ʻo Nicholas i ka "kau pū ʻana," e hoʻolohe ana i nā mele, ke pāʻani ʻana i nā pāʻani wikiō, ka hākōkō ʻana a me ke aʻo ʻana i ka jujitsu Brazil.

Ua komo ʻo Nicholas i kāna hoʻokolohua hoʻokolohua mua ma kahi o ʻekolu mau makahiki i hala. Ua nānā ia i ka pilina ma waena o ka hoʻoikaika kino a me ka maʻi maʻi maʻi maʻi.

"ʻO kekahi o nā hematologists ma ka haukapila a mākou i hele aku ai e ʻike he kanaka maʻi maʻi maʻi ʻo Nicholas," hoʻomanaʻo ʻo Bridget. “Aia ʻo ia i nā haʻuki, a me ka hydroxyurea ʻaʻole ʻo ia i ka haukapila e like me ma mua. No laila ua noi lākou iā mākou inā e hana mākou i kahi noiʻi e nānā i kona hanu ʻana. Ua nīnau wau, aia kekahi mau mea maikaʻi ʻole i ia? A ʻo ka mea maikaʻi ʻole inā ʻaʻole ia e hanu, ʻike ʻoe. No laila ua noi wau iā Nicholas inā ua maikaʻi a ua ʻae ʻo ia. A ua komo mākou i loko. ʻO nā mea āpau e hiki ke kōkua iā lākou e aʻo hou e pili ana i ka maʻi, ʻo mākou āpau no ia. "

ʻOiai ʻaʻole ia he mea e hoʻomaikaʻi ai ke olakino o ka poʻe i komo, ua hauʻoli ka makuahine a me kāna keikikāne me ko lāua komo pū ʻana a me ka manawa kūpono e kōkua ai i ka ʻike ʻepekema e pili ana i ka maʻi.

"Ke komo nei i nā noiʻi, manaʻo wau he mea kōkua ia i nā kauka e noʻonoʻo hou aʻe e pili ana i ka maʻi a, ʻike ʻoe, e puka mai me nā lāʻau hou aku a kōkua wale i nā mea āpau e loaʻa ana iā ia," wahi a Nicholas. "No laila ʻaʻole lākou mau ʻohana a lākou, ʻike ʻoe, i ka pilikia ʻeha a i ʻole ka haukapila e like me ka nui."

Ma hope o ka ʻike maikaʻi o ka ʻohana me ke aʻo ʻana, i ka makahiki 2010 ua komo ʻo Nicholas i ka lua o ka hoʻokolokolo hoʻokolohua. Ua aʻo kēia i ka hana māmā i nā ʻōpio me ka maʻi maʻi maʻi maʻi.

"Ua holo ʻo ia ma ke kaʻa paikikala paʻa me nā monitors i kau ʻia ma luna ona," wahi a Bridget. "A makemake lākou e hele wikiwiki ʻo ia a laila lohi. A hele wikiwiki hou. A hanu i loko o kahi paipu. A laila huki lākou i kona koko e hoʻāʻo. ʻAʻole hoʻomaikaʻi ʻia kona olakino, ʻo ka ʻike wale ʻana i ke ʻano o ka mea me ka cell sickle e hana nei, ʻike ʻoe i ke ʻano o kā lākou hana māmā. "

E like me ka hoʻokolokolo mua, ʻaʻole no Nicholas ka pono o ke komo ʻana akā e kōkua i nā kauka a me nā kānaka noiʻi e aʻo hou e pili ana i ka maʻi maʻi maʻi maʻi.

Wahi a Nicholas, "Lana koʻu manaʻo e like me ka hiki i nā kauka ke pili e pili ana i ka cell sickle, no ka mea e kōkua wale ia i nā mea maʻi maʻi maʻi a me ko lākou mau ʻohana, maopopo iā ʻoe, ʻaʻole i ka haukapila e like me ka nui. Hiki iā lākou ke hana i nā mea hou aʻe a lākou, ke ola maʻamau a me ka lawe ʻana me kā lākou papa kuhikuhi maʻamau ma kahi o ka hoʻolōʻihi ʻana i ka manawa no ka hele ʻana i ka haukapila a, ʻike ʻoe, e hele i loko o kēlā kaʻina hana ʻeha, nā mea like me kēlā.

Ke hāmama nei ʻo Bridget lāua ʻo Nicholas i ke komo ʻana i nā hoʻokolohua hoʻokolohua hou aku ke noʻonoʻo nei i nā mea a lākou e ʻoluʻolu ai me he ʻohana.

"Manaʻo wau e hana nā poʻe ʻē aʻe [e komo i ka noiʻi noiʻi] inā ʻaʻole lākou e manaʻo aia kahi hopena maikaʻi ʻole," i ʻōlelo ʻo ia. "Ke manaʻo nei wau, no ke aha mai? Inā kōkua ia e hoʻomaopopo i ka hematologists i ka cell sickle i kahi ala ʻokoʻa, naʻu nō āpau. No mākou nō mākou a pau. Makemake mākou e ʻike lākou e like me ka hiki iā lākou e pili ana i ka cell sickle. ”

Hana kope ʻia me ka ʻae mai. ʻAʻole kākoʻo a koi ʻole ʻo NIH i kekahi huahana, lawelawe, a i ʻole ka ʻikepili i wehewehe ʻia a hāʻawi ʻia ma aneʻi e Healthline. ʻAoʻao hope loiloi 20 ʻOkakopa 2017.