Nkhani za mabanja omwe akulimbana ndi matenda osowa: Ulendo wa chiyembekezo (Matenda Osowa)

Tangoganizirani, mwana wanu wamng'ono akumwetulira, akuthamanga komanso akusewera. Mukuyang'ana mosangalala sitepe iliyonse ya kukula kwake. Mukangoganiza kuti zonse zili bwino, mwadzidzidzi kayendedwe kake kamasintha, amayamba kugwa pafupipafupi. Kuona chinthu chonga chimenecho kungawopsyeze mayi kapena bambo aliyense, sichoncho? Nkhaniyi ikunena za mabanja angapo omwe sanataye chiyembekezo ngakhale akukumana ndi zokumana nazo zomvetsa chisoni chonchi. Nkhani zawo zimatiphunzitsa zambiri.

Nkhani ya "Will's": Tsiku Lomwe Zonse Zinasintha

Will ndi mnyamata wokonda nkhanza, wolimbikira, komanso wochezeka. Malinga ndi amayi ake, Casey, chilichonse chomwe chinachitika pakukula kwake chinkachitika pa nthawi yake. Will ali ndi zaka ziwiri, ankayenda bwino komanso ankasewera bwino, koma popanda chifukwa chomveka, anayamba kugwa pafupipafupi. Tsiku lina, mwadzidzidzi anagwa.

Kuyambira tsiku limenelo, thanzi la Will linayamba kufooka mofulumira. Pambuyo poyesedwa kambiri, madokotala anapeza kuti Will anali ndi matenda osowa kwambiri. Matendawa ankatchedwa `Leigh syndrome` .

Mwachidule, selo lililonse m'thupi lathu lili ndi magetsi ochepa otchedwa mitochondria omwe amapereka mphamvu. Mu matenda osowa awa otchedwa Leigh syndrome, malo opangira mphamvu awa sagwira ntchito bwino chifukwa cha kusintha kwa majini. Will adasintha majini ena, otchedwa SURF1. Matendawa ndi a gulu lalikulu la matenda otchedwa mitochondrial diseases.

Casey akukumbukira nthawi imeneyo ndi chisoni chachikulu. "Inali nthawi yovuta kwambiri m'miyoyo yathu. Pamene mwana wanga mmodzi sankatha kuyenda, mwana wanga winayo anali kuphunzira kuyenda." Tangoganizirani momwe mayiyo ayenera kuti anamvera.

Nkhondo yoposa kukhala kholo

Pamene izi zinachitikira mwana wawo, Casey ndi mwamuna wake, Doug, sanangokhala pansi n’kuonera. Anayamba kufufuza zonse zomwe zinalipo zokhudza matendawa. Monga momwe Casey akunenera, "Mukamva za matenda osowa ngati awa, mumamva ngati moyo wanu wonse ukuwonongeka pamaso panu ... kenako muyenera kuphunzira zonse zomwe zilipo zokhudza matenda a mwana wanu. Zili ngati kupita kusukulu ya zamankhwala ndikuphunzira maphunziro atsopano."

Atazindikira kuti panalibe chidziwitso ndi zinthu zofunikira zokwanira zokhudza matendawa, adagwirizana ndi mabanja ena omwe ali ndi ana omwe ali ndi vuto lomweli ndipo adayambitsa "Cure Mito Foundation." Cholinga cha bungweli chinali kuthandiza kupeza chithandizo kapena machiritso a Leigh syndrome.

Taonani mavuto omwe makolo ngati awa amakumana nawo komanso udindo waukulu womwe amachita.

"Sophia" amene anasintha ululu kukhala mphamvu

Nkhani ya mayi wotchedwa Sophia Silber ikugwirizananso ndi izi. Alinso m'bungwe la oyang'anira la `Cure Mito` Foundation. Zaka zisanu ndi chimodzi zapitazo, mwana wake wamkazi Miriam, milungu ingapo atabadwa, anamwalira ndi `Leigh syndrome`. Kudabwa kwa imfa yadzidzidzi komanso yosayembekezereka kunali kwakukulu kwambiri kotero kuti Sophia akunena kuti chochitikachi chinagawa miyoyo yawo m'magawo awiri: `asanayambe` ndi `atatha`. "Liwu lililonse, mphindi iliyonse ya nthawi imeneyo imakhala m'mitima mwathu kosatha," akutero.

Koma sanalekere pamenepo. Anagwiritsa ntchito chidziwitso chake chaukadaulo (kusanthula deta ya mayeso azachipatala) kuti apange kaundula wa odwala omwe angasonkhanitse zambiri zokhudza odwala omwe ali ndi matendawa padziko lonse lapansi. Wadzipereka maola masauzande ambiri pa izi.

N’chifukwa chiyani kaundula wa odwala ngati uyu ndi wofunika?

Tangoganizirani, chifukwa matenda amenewa ndi osowa kwambiri, palibe dokotala m'modzi amene angakumane ndi odwala ambiri ngati amenewa. Choncho chidziwitso chabwino kwambiri chokhudza momwe matendawa amakulira, momwe amachitikira, komanso momwe zizindikiro zimasinthira chimakhala cha odwala ndi mabanja awo. Chidziwitsochi chikasonkhanitsidwa pamalo amodzi, chimakhala chida chofunikira kwambiri kwa ofufuza omwe akufuna mankhwala atsopano. Chimatsegula njira yopezera chithandizo chatsopano.

Cholowa cha Chiyembekezo

Tiyeni tibwererenso ku nkhani ya Will. Lero, Will ali ndi zaka 11. Ngakhale kuti sangathe kuyenda, kulankhula, kapena kudya ndi pakamwa, matenda ake ali bwino. Chofunika kwambiri, luso lake la maganizo likadali labwino kwambiri. Amayi ake akuti amakonda kwambiri sayansi. Pa nthawi ya kuyimba foni posachedwa, anamwetulira ndipo anakweza chala chake mmwamba kuti atsimikizire izi.

Bungwe la Cure Mito Foundation, lomwe linayambitsidwa ndi makolo a Will, tsopano likupereka ndalama zothandizira matenda a majini ndi kafukufuku wokhudza kugwiritsa ntchito mankhwala ena kuti lione ngati mankhwala ena omwe alipo angagwiritsidwe ntchito pochiza matendawa.

Izi zikutanthauza kuti zomwe timachita m'dzina la Will zitha kupulumutsa moyo wa mwana wina yemwe ali ndi matendawa mtsogolo. Umenewo ndiye cholowa chomwe amasiya. Nkhanizi zimatiuza kuti ngakhale zinthu zitavuta bwanji, ngati titagwirizana ndikugwira ntchito ndi chiyembekezo, titha kusintha kwambiri. Nkhondo yomwe makolo awa akumenyera mwana wawo ikupanga tsogolo la ana ena zikwizikwi.