Hoʻopilikia ka maʻi ʻili i ka maka o ka pēpē, pane ka makuahine i nā ʻōlelo inaina.

ʻAʻohe mea i noʻonoʻo i ka maʻi o ke keiki ma mua o ka hānau ʻana.

He mea paʻakikī ka hānau ʻana o Rebecca Callaghan, me he mea lā ua hoʻopuni ka wai i ka ʻōpū a no laila ua manaʻo ʻia ka manawa. ʻAʻohe mea i manaʻo i ka maʻi a i ka wā i hānau ʻia ai ʻo Matilda momona, ʻike nā kauka i kahi kikoʻī uliuli ma ka helehelena o ke kaikamahine liʻiliʻi a lākou i kapa ai he maʻi. "makemake".

ʻO ka ʻoiaʻiʻo, ua hōʻike hou ʻia ka noiʻi ʻana ua loaʻa ʻo Matilda i ka maʻi Sturge-Weber. ʻO kahi maʻi e hiki ke hōʻeha i nā hōʻailona koʻikoʻi e like me ka epilepsy, ka pilikia aʻo a me ka pilikia hele. Ua hopohopo nui na makua o nalo.

ʻOi aku ka ʻino o ke kaikamahine liʻiliʻi i ʻōlelo ʻia e ka makuakāne ma kahi ninaninau me kela la i keia Mail:

ʻAʻole hiki iā mākou ke hele pū me ia no ka mea ua maʻi nui ʻo ia. Ua hauʻoli nui mākou i ka hiki ʻana mai o kā mākou pēpē a i kēia manawa ʻaʻole mākou i ʻike inā ola ʻo ia.

ʻO ka mea hou aku, ua hōʻike ʻo Matilda i nā pilikia puʻuwai. I kēia manawa, ua hoʻomaka ke kaikamahine liʻiliʻi i kahi lāʻau laser paʻakikī i waiho i kona ʻili ʻulaʻula loa. ʻO kēia lāʻau lapaʻau e wehe i ka hōʻailona hānau ma ka maka hiki ke lōʻihi a hiki i 16 mau makahiki.

He lōʻihi a ʻeha ka hoʻomaʻamaʻa ʻana i ka laser akā ua pane maikaʻi ʻo Matilda a me he mea lā he keiki hauʻoli, ʻo ka mea maʻalahi ʻole ka hoʻolohe ʻana i nā ʻōlelo a nā kānaka.

I nā manawa a Matilda e hele ai e hele, aia kekahi e mākaukau e hoʻoponopono i kona helehelena, ʻoiai e nīnau i ka ʻoiaʻiʻo he mau mākua maikaʻi nā mākua. Ua hoʻohui ka makuakāne:

ʻIke wale lākou i ka mea i mua o lākou a lele i nā hopena ʻeha. Manaʻo wau e hiki iā lākou ke ʻike ma waho aʻe o ka hānau ʻana a ʻike i ke ʻano o ka ʻānela liʻiliʻi maikaʻi o kā mākou kaikamahine.

ʻO ka mea pōʻino, ʻoi aku ka maʻi o ke olakino o ke keiki a i kēia manawa ua aneane makapō ʻo Matilde a hoʻohana i ka mea hele wāwae e hele ai. Ua ʻōlelo nā mākua, ʻoiai ʻo Matilda he kaikamahine hauʻoli a he ʻakaʻaka ʻo ia no kēlā me kēia.

I ka makahiki 2019, ua lilo ʻo Matilda i 11 a ua paʻi ʻia nā kiʻi me ia ma ka noho huila a mahalo i kēia mau kiʻi i hāʻawi nui nā poʻe lokomaikaʻi i ke kūʻai ʻana i ka noho huila hou. E hoʻi ʻo Matilda e hana i kāna mea makemake maikaʻi loa, e hele i waho a noho kaʻawale mai ka lehulehu.