Pitani ku nkhani

Nkhani ya Isla

ndi Andy Grist, 21st October 2024 (Yasinthidwa komaliza pa Disembala 19, 2024)
Yolembedwa ndi Andy Grist, abambo a Isla.

Isla akuyang'ana bambo ake Andy, omwe akumwetulira modekha pa kamera mu malaya ake obiriwira.

“Ndimakhala ndi banja langa ku Highlands ku Scotland. Ine ndi mkazi wanga, Tilli, tili ndi ana aakazi aŵiri odabwitsa, Emily (17) ndi Isla (14).

Isla adabadwa ndi recessive Dystrophic epidermolysis bullosa (RDEB), vuto lopweteka lomwe ife, monga makolo ambiri, tinali tisanayambe kumva. Chifukwa cha kuwononga kwa RDEB, zidawonekeratu kuti china chake chinali cholakwika. Moyo wathu unasintha kosatha pa 2 July 2008 ndipo banjali linayamba ulendo wosintha moyo pamodzi.

Khungu la Isla ndi lofooka kwambiri, mbali zonse zomwe mukuziwona komanso zomangira zapakamwa pake, mmero, m'mimba komanso mkati mwa thupi lake losalimba. Zilonda zina zomwe wakhala nazo komanso zowawa ndi nkhawa zomwe wakhala nazo zimakhala zokhumudwitsa kwambiri. Palibe chomwe chingaimitse EB pakadali pano ndipo chiyenera kusintha mwachangu momwe tingathere, ndipo tikufuna thandizo lanu kuti tichite izi. Isla adachitapo kale maopaleshoni opitilira 60, pansi pa mankhwala oletsa ululu, pa Chipatala chachikulu cha Ormond Streetku ,60! Nthawi zambiri amakhala wolimba mtima komanso wosalankhula, koma nthawi zonse amakhala wokoma mtima komanso woganizira ena omwe nthawi zambiri amakhala amwayi kuposa iye.

Thandizo lochokera ku DEBRA yatithandiza pa moyo wathu watsiku ndi tsiku kuyambira pachiyambi penipeni pa ulendo uno. DEBRA inatipatsa mwayi wopeza upangiri wapadera komanso chisamaliro cha Isla, munthu woti tilankhule naye, mayankho ena ndi chithandizo cholandirika., yothandiza komanso yamaganizo.

A DEBRA ndalama EB namwino anaphunzitsa Tilli ndi ine mmene bwino kusamalira khungu osalimba Isla. Ndi chithandizo ndi kuchita, tinakula ndi chidaliro ndipo tsopano, mwatsoka, akatswiri. Kuthera maola ambiri ndi gulu la osamalira odwala, kukonzekera ndi kupaka mafuta odzola ndi mavalidwe apadera kuti khungu la Isla lichiritsidwe, ndikuyesa kuliteteza ku matenda ndi kuwonongeka kwina. Kuti achite izi, Isla amafunikira mankhwala opha ululu amphamvu kuti aperekedwe kwa iye.

ndikudziwa zimenezo Isla amafuna zomwe tonse tikufuna: moyo wopanda zowawa. Moyo wopanda mantha kuti EB apitiliza kuwononga thupi lake lomwe likukulirakulirabe. Wandiuza izi, ndipo zinali zovuta kumva, koma zosatheka kunyalanyaza. Ndipo kotero tiyenera kupitiriza #NkhondoEB. "