Mutumin da ke Bayan ƙalubalen ALS yana nutsewa cikin takardar likita

Wadatacce

• Bita don

An gano tsohon ɗan wasan ƙwallon baseball na Kwalejin Boston Pete Frates da ALS (amyotrophic lateral sclerosis), wanda kuma aka sani da cutar Lou Gehrig, a cikin 2012. Shekaru biyu bayan haka, ya fito da ra'ayin tara kuɗi don rashin lafiya ta hanyar ƙirƙirar ƙalubalen ALS wanda daga baya ya zama abin al'ajabi na kafofin watsa labarun.

Amma duk da haka a yau, yayin da Frates ya ta'allaka kan tallafin rayuwa a gida, danginsa suna samun wahalar samun dala 85,000 ko $95,000 a wata da ake buƙata don raya shi. "Kowane iyali za a karye saboda wannan," mahaifin Frates, John, ya shaida wa wata alaka ta CNN WBZ. "Bayan shekaru 2 da rabi na irin wannan kuɗaɗen, ya zama abin da ba zai iya dorewa a gare mu ba. Ba za mu iya biya ba."

https://www.facebook.com/plugins/post.php?href=https%3A%2F%2F www.facebook.com%2Fpetefrates3%2Fphotos%2Fa.453750851431621.1073741827.453748098098563%2F618792568260383%3F

Manufar ƙalubalen ALS ta kasance mai sauƙi: mutum yana zubar da guga na ruwan sanyi kan kan su kuma ya sanya komai gaba ɗaya akan kafofin watsa labarun. Sannan, suna ƙalubalantar abokai da dangi su yi haka ko ba da gudummawar kuɗi ga Ƙungiyar ALS. (Mai Alaƙa: Shahararrun mashahuran mu 7 da suka ɗauki Kalubalen Buhun Ice na ALS)

A cikin makonni takwas, hazakar ra'ayin Frates ya tara sama da dala miliyan 115 godiya ga mutane miliyan 17 da suka shiga. A bara, kungiyar ALS ta sanar da cewa gudummawar ta taimaka musu ID wani kwayar halitta mai alhakin cutar da ke sa mutane su daina sarrafa motsin tsoka, a ƙarshe sun kawar da ikon su na ci, magana, tafiya da kuma, a ƙarshe, numfashi.

Ba wai kawai ba amma a farkon wannan watan FDA ta ba da sanarwar cewa ba da daɗewa ba za a sami sabon magani don kula da ALS-sabon zaɓin magani na farko da aka samu cikin sama da shekaru ashirin. Abin takaici, yana da wahala a faɗi ko wannan binciken zai taimaki Frates cikin lokaci. Wani wanda ya kafa ƙalubalen, Anthony Senerchia mai shekaru 46, ya mutu a ƙarshen Nuwamba 2017 bayan yaƙin shekaru 14 da cutar.

Kodayake yana kashe $ 3,000 a rana don rayar da shi, matar Frates Julie ta ƙi ƙaura da mijinta zuwa wurin aiki, duk da cewa zai kasance mai rahusa ga dangi. "Muna so kawai mu riƙe shi a gida tare da danginsa," in ji ta ga WBZ, tare da bayyana cewa ɓata lokaci tare da 'yarsa mai shekaru 2 na ɗaya daga cikin abubuwan da ke sa Frates yaƙi don rayuwarsa.

https://www.facebook.com/plugins/post.php?href=https%3A%2F%2F www.facebook.com%2Fpetefrates3%2Fphotos%2Fa.453750268098346.1073741825.453748098098563%2F639128009555%%FF

Yanzu, dangin Frates suna sake tuntubar jama'a ta hanyar ƙirƙirar sabon asusu ta hanyar ALS Association don taimakawa iyalai kamar Pete damar iya ajiye ƙaunatattunsu a gida. An yi wa lakabi da Shirin Kiwon Lafiya na Gida, manufarsa ita ce ta kai dala miliyan 1, kuma za a gudanar da tara kuɗi ranar 5 ga Yuni.

Bita don