Indoda Engemuva Kwenselelo Ye-ALS Icwile Ezikweletini Zezokwelapha

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Owayedlalela iBoston College baseball uPete Frates kwatholakala ukuthi une-ALS (amyotrophic lateral sclerosis), eyaziwa nangokuthi isifo sikaLou Gehrig, ngo-2012. Eminyakeni emibili kamuva, waqhamuka nomqondo wokuqoqa imali yokugula ngokudala inselelo ye-ALS kamuva yaba yinto yezokuxhumana nabantu.

Kodwa-ke namuhla, njengoba uFratile elele ekusekelweni kwempilo ekhaya, umndeni wakhe ukuthola kunzima ngokwengeziwe ukukhokha ama- $ 85,000 noma ama- $ 95,000 ngenyanga adingekayo ukuze aqhubeke ephila. "Noma imuphi umndeni uzophucwa ngenxa yalokhu," kusho ubaba kaFrates, uJohn, etshela abalingani be-CNN i-WBZ. "Ngemuva kweminyaka emi-2 nohhafu yalolu hlobo lwezindleko, seluphenduke into engafanele neze kithi. Asikwazi ukukukhokhela."

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Umqondo wenselelo ye-ALS wawulula: umuntu ulahla ibhakede lamanzi abandayo eqhwa phezu kwekhanda lakhe bese ebhala yonke into ezinkundleni zokuxhumana. Ngemuva kwalokho, baphonsela inselelo abangani nomndeni ukuthi benze okufanayo noma banikele ngemali kwi-ALS Association. (Kuhlobene: Osaziwayo Bethu Abayi-7 Esibathandayo Abathathe Inselelo Yebhakede Leqhwa ye-ALS)

Ngokuhamba kwamasonto ayisishiyagalombili, umqondo kaFrates okhaliphile waqoqa imali engaphezu kwezigidi ezingama- $ 115 ngenxa yabantu abayizigidi eziyi-17 ababambe iqhaza. Ngonyaka odlule, i-ALS Association yamemezela ukuthi le minikelo yabasiza ukuba babe ne-ID yesakhi esibangela lesi sifo esidala ukuthi abantu bahluleke ukulawula ukunyakaza kwemisipha, ekugcineni bathathe amandla abo okudla, ukukhuluma, ukuhamba futhi ekugcineni baphefumule.

Akugcini lapho kepha ekuqaleni kwalenyanga i-FDA imemezele ukuthi kuzotholakala umuthi omusha ukwelapha i-ALS - indlela yokuqala yokwelashwa entsha etholakala esikhathini esingaphezu kwamashumi amabili eminyaka. Ngeshwa, kunzima ukusho ukuthi lokhu kutholwa kuzosiza ama-Frates ngesikhathi. Omunye umsunguli wale nselelo, u-Anthony Senerchia, 46, ushone ngasekupheleni kukaNovemba 2017 ngemuva kokulwa nalesi sifo iminyaka engu-14.

Noma kubiza u- $ 3,000 ngosuku ukumgcina ephila, unkosikazi kaFrates uJulie uyenqaba ukuhambisa umyeni wakhe ayiswe esikhungweni, noma ngabe kungabiza kancane emndenini. "Sifuna ukumgcina ekhaya nomndeni wakhe," utshele i-WBZ, eveza ukuthi ukuchitha isikhathi nendodakazi yakhe eneminyaka emibili kungenye yezinto ezimbalwa ezigcina uFates elwela impilo yakhe.

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Manje, umndeni kaFrates uphinde ufinyelele emphakathini ngokudala isikhwama esisha nge-ALS Association ukusiza imindeni efana noPete ukuthi ikwazi ukugcina abathandekayo bayo ekhaya. Ibizwa ngokuthi yi-Home Health Care Initiative, inhloso yayo ukufinyelela ku- $ 1 million, kanti umqoqi wezimali uzoba ngoJuni 5. Bhekisa phambili kwi-ALS Association ukuthola eminye imininingwane.

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