Pokumbukira Aminah ndi Marwa Tariq
Ana athu aakazi okongola tsopano ndi angelo. Anataya nkhondo yawo ndi Herlitz junctional epidermolysis bullosa. Uwu ndi uthenga kwa iwo womwe banja lathu likufuna kugawana nawo ...
Pamene Aminah anabadwa inali nthawi yosokoneza. Chilichonse chomwe tinadutsamo chinali chodabwitsa. Pamene tinamuwona Aminah mu ululu wosatha zinali zowawa kwambiri. Chilichonse m’moyo wathu chinasintha.
EB ndi chikhalidwe chomwe chimakhudza banja lonse. Makolo ndi abale amasinthanso. Maola omwe amatengedwa kuti asinthe mavalidwe amtambo patsiku lonselo. Zimakupangitsani kukhala otopa, m'malingaliro komanso mwakuthupi.
Marwa atabadwa patapita zaka XNUMX, tinapezanso kuti ali ndi vuto lomweli. Tinkadziwa zimene tifunika kukumana nazo ndiponso mmene angavutikire pa moyo wake waufupi. Zinali surreal kuti zonse zinachitika kachiwiri, makamaka kuona mwana wathu wina akudutsa mu ululu wa matuza ndi bandeji.
Tili ndi atsikana ena atatu kotero kuti chaka chatha chinali chovuta kwambiri kwa ana athu ena kumvetsetsa chifukwa chake amayi ndi abambo adatenga nthawi yayitali kuvala Marwa. Apa ndipamene Namwino wa ku Hospice ndi Community Nesi akubwera kudzatithandiza kusamba ndi kuvala kwa Marwa kunasintha kwambiri banja lathu.
Zinali zovuta kuti iwo amvetse chifukwa chimene tinkakuchitirani pamitsamiro ndipo sitinathe kukugwirani nonse awiri, ngakhalenso kufotokozera aliyense chifukwa chimene sakanakukhudzani.
Koma tikukumbukira zambiri za iwe, Aminah. Kugona pa mphasa yanu yowomba raspberries kwa aliyense ndikuwonera pulogalamu yomwe mumakonda, Mu Night Garden. Mumangokonda Upsy Daisy ndikugwedeza manja anu Makka Pakka atabwera pazenera. Munali otengeka ndi Mr Tumble.
Marwa, nawenso unali wolimba mtima ndipo tinkasangalala kwambiri kucheza limodzi. Munkakonda kuonera TV ndipo mumamwetulira nthawi iliyonse azichemwali anu akamacheza nanu. Monga mlongo wanu wamkulu Aminah, mudakondanso Ku The Night Garden ndipo mumathera nthawi yochuluka mukuwona ndi kukonda aliyense. Tinakutengerani ku gombe la Blackpool ndipo munali ndi nthawi yabwino.
Ndidzakukondani ndi kukusowa nthawi zonse. Khalani pamtendere, ana anga.
Tikufuna kunena kuti ngati pali mabanja ena paudindo wathu sali okha. Kupempha thandizo kungathandize anthu pamene akukumana ndi zovuta. Ngakhale kulola osamalira odwala kukhala okhudzidwa chifukwa angathandize banja kutsegulira chithandizo china ndikugwira ntchito limodzi ndi magulu ena apadera okhudzidwa ndi mwanayo zomwe zimapindulitsa banja lonse.
Monga banja tikufuna kuthokoza a Clinical Specialist Nurses ku Birmingham Children's Hospital, makamaka Dawn ndi Danielle. Dawn, munali ndi ine kwa makanda onse awiri ndipo munatichezera milungu ingapo iliyonse ndi kutithandiza kwambiri. Ndidzakukumbukirani nthawi zonse.
Ogwira ntchito ku Forget Me Not Hospice anali odabwitsa, makamaka Liz Lyles ndi Dr Catriona McKeating. Anapitilizabe kuthandiza Marwa ndi zosowa zake zachipatala kuti amuthandize kukhala womasuka momwe angathere m'moyo wake waufupi. Banja lathu likufuna kuwathokoza kwambiri.
DEBRA, unandithandizadi kupeza zinthu zofunika kwa atsikana anga. Webusaiti yanu yandithandiza kumvetsetsa vutoli ndipo tsiku lina ndikuyembekeza kuti padzakhala chithandizo ndi mankhwala.