ʻO ke kanaka ma hope o ka hoʻokūkū ALS ke hāʻule nei i loko o nā bila lāʻau lapaʻau

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Ua ʻike ʻia ʻo Pete Frates ka mea pāʻani pīpeku mua ma Boston College me ALS (amyotrophic lateral sclerosis), i kapa ʻia ʻo Lou Gehrig's disease, ma 2012. ʻElua mau makahiki ma hope mai, ua loaʻa iā ia ka manaʻo e hoʻonui i ke kālā no ka maʻi ma o ka hoʻokumu ʻana i ka pilikia ALS ma hope. ua lilo i mea hoʻolaha pāpili.

Eia nō naʻe, i kēia lā, ʻoiai ʻo Frates e waiho nei i ke kākoʻo ola ma ka home, ua paʻakikī loa kona ʻohana i ka loaʻa ʻana o $85,000 a i ʻole $95,000 i ka mahina e pono ai ke ola. "E haʻihaʻi kekahi ʻohana ma muli o kēia," i haʻi aku ai ka makuakāne o Frates, ʻo John, iā CNN pili WBZ. "Ma hope o 2 a me ka hapa makahiki o kēia ʻano kālā, ua lilo ia i mea hiki ʻole iā mākou. ʻAʻole hiki iā mākou ke loaʻa."

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He mea maʻalahi ka manaʻo o ka luʻi ALS: hoʻolei ke kanaka i kahi bākeke wai anuanu ma luna o kona poʻo a hoʻolaha i nā mea āpau ma ka pāpaho. A laila, hoʻoweliweli lākou i nā hoaaloha a me nā ʻohana e hana like a hāʻawi kālā i ka The ALS Association. (E pili ana: ʻO kā mākou 7 mau mea kaulana i lawe i ka ALS Ice Bucket Challenge)

I loko o ʻewalu pule, ua hoʻonui ʻia ka manaʻo noʻeau o Frates ma luna o $115 miliona mahalo i ka 17 miliona poʻe i komo. I ka makahiki i hala aku nei, ua hoʻolaha ka ALS Association i nā haʻawina i kōkua iā lākou e hōʻoia i kahi gene e pili ana i ka maʻi e hoʻonele ai i ka poʻe i ka neʻe ʻana o ka ʻiʻo, a laila e hoʻopau i ko lākou hiki ke ʻai, ʻōlelo, hele a, ma hope, hanu.

ʻAʻole ʻo ia wale nō akā ma mua o kēia mahina ua hoʻolaha ka FDA e loaʻa koke kahi lāʻau lapaʻau hou e mālama iā ALS-ke koho lapaʻau hou mua loa i loaʻa i loko o ʻelua mau makahiki. ʻO ka mea pōʻino, paʻakikī ke haʻi inā e kōkua kēia ʻimi iā Frates i ka manawa. ʻO kekahi mea hoʻokumu ʻē aʻe o ka hoʻokūkū, ʻo Anthony Senerchia, 46 makahiki, ua hala i ka hopena o Nowemapa 2017 ma hope o ke kaua ʻana he 14 makahiki me ka maʻi.

ʻOiai he $3,000 i ka lā no ka mālama ʻana iā ia, ua hōʻole ka wahine a Frates ʻo Julie e hoʻoneʻe i kāna kāne i kahi hale, ʻoiai ʻoi aku ka maʻalahi no ka ʻohana. "Makemake wale mākou e mālama iā ia ma ka home me kona ʻohana," haʻi ʻo ia iā WBZ, e hōʻike ana ʻo ka hoʻolimalima manawa me kāna kaikamahine 2 makahiki ʻo ia kekahi o nā mea liʻiliʻi e hoʻomau nei i ka hakakā ʻana o Frates no kona ola.

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I kēia manawa, hele hou aku ka ʻohana o Frates i ka lehulehu ma o ka hoʻokumu ʻana i kahi kālā hou ma o The ALS Association e kōkua i nā ʻohana e like me ko Pete e mālama i kā lākou poʻe aloha ma ka home. Ua kapa ʻia ʻo ka Home Health Care Initiative, ʻo kāna pahuhopu e hōʻea i $ 1 miliona, a e mālama ʻia kahi ʻohi kālā ma Iune 5. E poʻo i ka The ALS Association no ka ʻike hou aku.

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