E noʻonoʻo, e minoʻaka ana kāu pēpē liʻiliʻi, e holo ana a e pāʻani ana. Ke nānā hauʻoli nei ʻoe i kēlā me kēia ʻanuʻu o kona ulu ʻana. I kou manaʻo ʻana ua maikaʻi nā mea a pau, loli koke kona hele ʻana, hoʻomaka ʻo ia e hāʻule pinepine. ʻO ka ʻike ʻana i kahi mea e like me ia e hopohopo ai kekahi makuahine a makuakāne paha, ʻeā? E pili ana kēia i kekahi mau ʻohana i haʻalele ʻole i ka manaʻolana ʻoiai ke kū nei i kahi ʻike kaumaha. He nui nā mea a kā lākou mau moʻolelo e aʻo mai ai iā mākou.
Ka Moʻolelo o "Will": Ka Lā i Hoʻololi ʻia ai nā Mea āpau
He keiki kolohe, ʻeleu, a hele wale ʻo Will. Wahi a kona makuahine, ʻo Casey, ua kūpono kēlā me kēia hanana koʻikoʻi o kona ulu ʻana i ka manawa kūpono. I ka piha ʻana o Will i ʻelua makahiki, ua hele maikaʻi ʻo ia a pāʻani, akā no ke kumu ʻole, ua hoʻomaka ʻo ia e hāʻule pinepine. I kekahi lā, ua hāʻule koke ʻo ia.
Mai ia lā mai, ua hoʻomaka ka emi koke ʻana o ke olakino o Will. Ma hope o nā hoʻokolohua he nui, ua ʻike hope nā kauka he maʻi laha ʻole ko Will. Ua kapa ʻia ka maʻi ʻo 'Leigh syndrome' .
I ka ʻōlelo maʻalahi, aia i kēlā me kēia cell i loko o ko mākou kino nā mea kanu mana liʻiliʻi i kapa ʻia ʻo mitochondria e hāʻawi ana i ka ikehu. I loko o kēia maʻi laha ʻole i kapa ʻia ʻo Leigh syndrome, ʻaʻole hana pono kēia mau kikowaena hoʻoulu ikehu ma muli o kahi mutation genetic. Ua loaʻa iā Will kahi mutation i loko o kekahi o kēlā mau genes, i kapa ʻia ʻo SURF1. No kahi hui nui o nā maʻi i kapa ʻia ʻo nā maʻi mitochondrial kēia maʻi.
Ua hoʻomanaʻo ʻo Casey i kēlā manawa me ka manaʻo nui. "He manawa paʻakikī loa ia i ko mākou ola. ʻOiai ʻaʻole hiki i kekahi o kaʻu mau keiki ke hele, ke aʻo nei kaʻu keiki ʻē aʻe e hele." E noʻonoʻo i ka manaʻo o kēlā makuahine.
He kaua ma ʻō aku o ka makua
I ka wā i hiki mai ai kēia i kā lāua keiki, ʻaʻole i noho wale ʻo Casey lāua ʻo kāna kāne, ʻo Doug, a nānā wale. Ua hoʻomaka lāua e noiʻi i nā mea āpau e pono ai ke ʻike e pili ana i ka maʻi. E like me ka ʻōlelo a Casey, "Ke lohe ʻoe e pili ana i kahi maʻi laha ʻole e like me kēia, me he mea lā e hiolo ana kou ola holoʻokoʻa i mua ou... a laila pono ʻoe e aʻo i nā mea āpau e pono ai ke ʻike e pili ana i ka maʻi o kāu keiki. Ua like ia me ke hele ʻana i ke kula lapaʻau a lawe i kahi papa hou."
I ko lākou ʻike ʻana i ka liʻiliʻi o ka ʻike a me nā kumuwaiwai e pili ana i ka maʻi, ua hui pū lākou me nā ʻohana ʻē aʻe me nā keiki me ke ʻano like a hoʻomaka i ka "Cure Mito Foundation." ʻO ka pahuhopu o kēia kahua, ʻo ia ke kōkua i ka loaʻa ʻana o kahi lāʻau lapaʻau no ka maʻi Leigh.
"He ʻohana o kahi keiki me kahi maʻi laha ʻole, ma waho aʻe o ka mālama ʻana i ke keiki, ʻo mākou nā mea kākoʻo nui no lākou, ma ke ʻano he mau kahu maʻi i ka pō, e hōʻiliʻili ana i nā miliona kālā. ʻAʻole mākou i ʻike inā e holo pono kēia mau mea. Akā, ke hoʻāʻo nei mākou." - Casey Wollaben
E nānā i nā pilikia e kū nei i nā mākua e like me kēia a me ke kuleana nui a lākou e pāʻani ai.
| Nā pilikia i kū i nā mākua o kahi keiki me kahi maʻi laha ʻole | Nā kuleana like ʻole a lākou e pāʻani ai |
|---|---|
| ʻAʻohe ʻike pololei a me nā kumuwaiwai e pili ana i ka maʻi. | Mea Noiʻi: Ke aʻo ʻana e pili ana i ka maʻi ma kāu iho. |
| Nā kumukūʻai kālā kiʻekiʻe no ka mālama ʻana a me nā lawelawe kākoʻo. | Ka mea hōʻiliʻili kālā: Ke ʻimi nei i ke kālā no ka noiʻi. |
| ʻO ke kaumaha nui o ka naʻau a me ka noho kaʻawale ʻana ma ka nohona. | Luna Hoʻoponopono: Kākoʻo i nā pono a me nā pono o ke keiki. |
| Mālama olakino kūikawā e pono ai i nā hola 24 o ka lā. | Kahu hānai: Ke hāʻawi nei i ka mālama olakino i ke keiki ma ka home. |
ʻO "Sophia" nāna i hoʻololi i ka ʻeha i ikaika
Ua pili pū kekahi moʻolelo o kahi makuahine i kapa ʻia ʻo Sophia Silber i kēia. Aia nō hoʻi ʻo ia ma ka papa alakaʻi o ka `Cure Mito` Foundation. ʻEono makahiki i hala aku nei, ua hala aku kāna kaikamahine liʻiliʻi ʻo Miriam, i kekahi mau pule ma hope o ka hānau ʻana, mai ka `Leigh syndrome`. ʻO ke kūpilikiʻi o kēlā make koke a me ka manaʻo ʻole ʻia ua nui loa ia a ʻōlelo ʻo Sophia ua hoʻokaʻawale ka hanana i ko lāua ola i ʻelua ʻāpana: `ma mua` a me `ma hope`. "ʻO kēlā me kēia huaʻōlelo, kēlā me kēia minuke o kēlā manawa e mau loa ana i loko o ko mākou mau puʻuwai," wahi āna.
Akā, ʻaʻole ʻo ia i pau ma laila. Ua hoʻohana ʻo ia i kona ʻike ʻoihana (ka loiloi ʻikepili hoʻokolohua lapaʻau) e hana i kahi papa inoa o nā mea maʻi e hōʻiliʻili i ka ʻike e pili ana i nā mea maʻi me kēia maʻi a puni ka honua. Ua hāʻawi manawaleʻa ʻo ia i nā tausani hola no kēia.
No ke aha he mea nui kēia ʻano papa inoa o nā mea maʻi?
E noʻonoʻo, no ka mea, he mea kakaikahi loa kēia mau maʻi, ʻaʻohe kauka hoʻokahi e hālāwai me ka nui o nā maʻi e like me kēia. No laila, ʻo ka ʻike maikaʻi loa e pili ana i ke ʻano o ka ulu ʻana o ka maʻi, kona ʻano, a pehea e loli ai nā hōʻailona e waiho ana me nā maʻi a me ko lākou mau ʻohana. Ke hōʻiliʻili ʻia kēia ʻike ma kahi hoʻokahi, lilo ia i waiwai nui no nā mea noiʻi e ʻimi nei i nā lāʻau lapaʻau hou. Hoʻomākaukau ia i ke ala no nā lāʻau lapaʻau hou.
Hoʻoilina o ka Manaʻolana
E hoʻi kākou i ka moʻolelo a Will. I kēia lā, he 11 makahiki ʻo Will. ʻOiai ʻaʻole hiki iā ia ke hele, kamaʻilio, a ʻai paha ma ka waha, ua paʻa kona kūlana. ʻO ka mea nui loa, ua maikaʻi loa kona noʻonoʻo. Ua ʻōlelo kona makuahine ʻo ia ka mea hoihoi loa i ka ʻepekema. I ka wā o kahi kelepona wikiō i hala koke aku nei, ua minoʻaka ʻo ia a hāʻawi i kahi manamana nui i luna e hōʻoia i kēia.
ʻO ka Cure Mito Foundation, i hoʻokumu ʻia e nā mākua o Will, ke kākoʻo kālā nei i ka hoʻōla gene a me ka noiʻi hoʻohana hou ʻana i nā lāʻau lapaʻau e ʻike ai inā hiki ke hoʻohana ʻia nā lāʻau lapaʻau ʻē aʻe e mālama ai i ka maʻi.
ʻO ia hoʻi, ʻo ka mea a mākou e hana ai ma ka inoa ʻo Will e hiki ke hoʻopakele i ke ola o kekahi keiki ʻē aʻe me kēia maʻi i ka wā e hiki mai ana. ʻO ia ka hoʻoilina āna i waiho ai. Ke haʻi mai nei kēia mau moʻolelo iā mākou ʻoiai ke paʻakikī o ke kūlana, inā e hui pū mākou a hana me ka manaʻolana, hiki iā mākou ke hana i kahi ʻokoʻa nui. ʻO ke kaua a kēia mau mākua e hakakā nei no kā lākou keiki ke hoʻokumu nei i kahi wā e hiki mai ana no nā tausani o nā keiki ʻē aʻe.
Leka Lawe-Home
- ʻAʻole ka hopena o ke ola ka ʻike ʻia ʻana he maʻi laha ʻole. ʻO ka ʻike, ka lokahi, a me ka manaʻolana kou mau ikaika nui loa.
- Inā ʻike ʻoe i kekahi mau loli ʻē a wehewehe ʻole ʻia i ka ulu ʻana a i ʻole ke ʻano o kāu keiki, mai hoʻowahāwahā iā ia. E ʻimi koke i ka ʻōlelo aʻo mai ke kauka kūpono.
- He mea nui loa ko kākou kākoʻo a me ko kākou hoʻomaopopo ʻana i nā ʻohana e noho nei me kēia mau kūlana. Mai hoʻokaʻawale iā lākou, akā, e lilo i mea ikaika no lākou.
- He waiwai nui nā ʻike a me ka ʻike o nā mea maʻi a me ko lākou mau ʻohana no ka noiʻi ʻana e loaʻa nā lāʻau lapaʻau hou.
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