Pamene usiku wautali kwambiri wa chaka ukuyamba, mabanja ena amakumana ndi mdima wakuya kwambiri kuposa usiku weniweniwo.
Khrisimasi yapitayi, m’malo mochita chikondwerero, Ben ndi Alice anachita mantha kwambiri. Mwana wawo wamkazi wobadwa kumene, Darcie, anali kusowa khungu m’manja mwake. Misomali yake inali isanapangike. Palibe amene ankadziwa chifukwa chake.
Pambuyo pa maulendo angapo azachipatala, adalandira matenda: epidermolysis bullosa (EB) - chikhalidwe chosowa komanso chowawa chomwe chimapangitsa khungu kukhala lolimba ngati mapiko agulugufe. Darcie ali ndi imodzi mwamawonekedwe ovuta kwambiri, osakhudza khungu lake, komanso ziwalo zake zamkati.
Madokotala adawauza kuti sangakhale ndi moyo zaka zaubwana.
“Chimwemwe chathu chinasweka kukhala zidutswa miliyoni imodzi. Tinafunikira thandizo.”
Thandizo limenelo linachokera kwa DEBRA
Zikomo chifukwa cha DEBRA EB Community Support Team, Ben ndi Alice analandira:
- Zovala zopanda msoko kotero Darcie amatha kuvala zovala zokongola popanda kupweteka
- Zikopa za nkhosa kuteteza khungu lake losakhwima
- A kusintha tebulo kuti muchepetse kupsinjika pamisana yawo
- Thandizo pamtima kuchokera ku moyo wawo, Amelia
DEBRA asanakhalepo, tinkayenera kumuveka zovala zowonekera kunja. Tsopano akuwoneka ngati mwana wina aliyense - ndipo izi zikutanthauza dziko kwa ife.
Zopereka zanu zitha kukhala zowunikira mumdima
M'nyengo yozizira iyi, mutha kuthandiza mabanja ambiri ngati a Darcie. Mphatso yanu ikhoza kuthandiza DEBRA kupereka:
- Katswiri zinthu kuti kuchepetsa ululu wa tsiku ndi tsiku
- Thandizo pamtima kwa makolo omwe akukumana ndi zovuta zosaneneka
- Chiyembekezo cha tsogolo ndi mankhwala ndi machiritso
Zomwe mungapereke
- £10 akhoza kugula a spoon yofewa yoyamwitsa ndi mswachi wodziwa bwino kwa mwana ngati Darcie kuti athandizire kupewa kuwonongeka kwina mkamwa.
- £25 ikhoza kuthandizira ndalama EB Community Support Manager kupereka chithandizo ndi chithandizo chamaganizo kwa mabanja ndi anthu omwe akhudzidwa ndi EB.
- £50 akhoza kuthandiza ndalama kafukufuku wosintha moyo pamankhwala amitundu yonse ya EB, kupereka mpumulo ku ululu ndi kuyabwa ndi chiyembekezo chamtsogolo.
Monga kandulo, moyo wa Darcie ukhoza kuyaka kwakanthawi kochepa. Koma pamene likutero, makolo ake amafuna kulidzaza ndi chikondi, chikondi ndi kuwala.
Kodi muthandizira kubweretsa kuwala kwausiku wautali kwambiri?
Thandizani tsopano ndikukhala chowunikira cha chiyembekezo kwa mabanja omwe ali ndi EB.
Ndalama zomwe zasonkhanitsidwa ku DEBRA zimathandizira kupereka chithandizo chomwe cholinga chake ndi kupititsa patsogolo moyo wa anthu omwe ali ndi mitundu yonse ya EB. Amathandizanso ndalama zofufuzira zamankhwala am'tsogolo.