Teebereza, omwana wo omuto amwenya, ng’adduka era ng’azannya. Oli mu ssanyu ng’otunuulira buli mutendera gw’enkulaakulana ye. Just when you think everything is fine, omulundi gumu entambula ye ekyuka, atandika okugwa emirundi mingi. Okulaba ekintu ng’ekyo kyanditiisizza maama oba taata yenna, nedda? Kino kikwata ku maka matono agataggwaamu ssuubi wadde nga boolekedde ekintu ekimenya omutima bwe kiti. Emboozi zaabwe zituyigiriza bingi.
Emboozi ya "Will": Olunaku Buli Bimu lwe byakyuka
Will mulenzi muto muvuyo nnyo, akola nnyo era akola emirimu egy’enjawulo. Okusinziira ku nnyina Casey, buli nsonga enkulu mu nkulaakulana ye yatuuka mu budde. Will bwe yali wa myaka nga ebiri, yali atambula era ng’azannya bulungi, naye awatali nsonga, yatandika okugwa ennyo. Olunaku lumu, yagwa mangu.
Okuva ku lunaku olwo, obulamu bwa Will bwatandika okwonooneka amangu. Oluvannyuma lw’okukeberebwa ennyo, abasawo baatuuka n’okukizuula nti Will yalina obulwadde obutatera kulabika. Obulwadde buno bwayitibwa `Leigh syndrome` .
Mu ngeri ennyangu, buli katoffaali mu mubiri gwaffe kalina obuuma obutono obuyitibwa mitochondria obuwa amaanyi. Mu bulwadde buno obutatera kulabika obuyitibwa Leigh syndrome, ebifo bino ebikola amaanyi tebikola bulungi olw’enkyukakyuka mu buzaale. Will yalina enkyukakyuka mu emu ku buzaale obwo, eyitibwa SURF1. Embeera eno eri mu kibinja ekinene eky’endwadde eziyitibwa endwadde za mitochondrial.
Casey ajjukira ekiseera ekyo n’enneewulira nnyingi. "Kyali kiseera kizibu nnyo mu bulamu bwaffe. Nga omu ku baana bange tasobola kutambula, omwana wange omulala yali ayiga okutambula." Teebereza engeri maama oyo gy’ateekwa okuba nga yawulira.
Olutalo olusukka ku buzadde
Kino bwe kyatuuka ku mwana waabwe, Casey ne bba Doug tebaatuula butuuzi ne balaba. Baatandika okunoonyereza ku buli kimu ekyaliwo okumanya ku bulwadde buno. Nga Casey bw'agamba nti, "Bw'owulira obulwadde obutatera kulabika nga buno, owulira ng'obulamu bwo bwonna bugwa mu maaso go... olwo n'oyiga buli kimu ekiriwo okumanya ku bulwadde bw'omwana wo. Kiba ng'okugenda mu ssomero ly'obusawo n'okola omusomo omupya gwonna."
Bwe baategeera engeri amawulire n'ebikozesebwa ebitono gye byaliwo ku bulwadde buno, beegatta n'amaka amalala agalina abaana abalina embeera y'emu ne batandikawo "Cure Mito Foundation." Ekigendererwa ky’ekitongole kino kyali kya kuyamba kunoonya bujjanjabi oba ddagala eriwonya obulwadde bwa Leigh syndrome.
"Amaka g'omwana alina obulwadde obutatera kulabika, ng'oggyeeko okulabirira omwana, ffe tubawagira nnyo, okubeera ba nurse ekiro, okusonda obukadde bwa ddoola. Tetumanyi na oba ebintu bino binaakola. Naye, tugezaako." - Omuyimbi Casey Wollaben
Laba okusoomoozebwa abazadde nga bano kwe boolekagana nakwo n’omulimu omunene ennyo gwe bakola.
| Okusoomoozebwa abazadde b’omwana alina obulwadde obutatera kubaawo kwe boolekagana nabyo | Emirimu egy’enjawulo gye bakola |
|---|---|
| Obutabeera na mawulire matuufu n’ebikozesebwa ku bulwadde buno. | Omunoonyereza: Okuyiga ku bulwadde buno ku bubwo. |
| Ensimbi nnyingi ezisaasaanyizibwa ku bujjanjabi n‟obuyambi. | Okusonda ssente: Okunoonya ssente z’okunoonyereza. |
| Situleesi ey’amaanyi mu nneewulira n’okwekutula ku bantu. | Omuwolereza: Muwolereza eddembe n’ebirungi by’omwana. |
| Obujjanjabi obw’enjawulo obwetaagisa essaawa 24 buli lunaku. | Nurse: Okuwa omwana obujjanjabi awaka. |
"Sophia" eyafuula obulumi amaanyi
Emboozi ya maama ayitibwa Sophia Silber nayo ekwatagana ne kino. Era ali ku lukiiko olufuzi olwa `Cure Mito` Foundation. Emyaka mukaaga egiyise, muwala we omuto Miriam, nga wayise wiiki ntono ng’azaalibwa, yafa obulwadde bwa `Leigh syndrome`. Ensisi y’okufa okwo okw’amangu, okwali tekusuubirwa kwali kunene nnyo ne kiba nti Sophia agamba nti ekintu ekyo kyayawula obulamu bwabwe mu bitundu bibiri: `nga tebunnabaawo` ne `oluvannyuma`. "Buli kigambo, buli ddakiika y'ekiseera ekyo ebeera mu mitima gyaffe emirembe gyonna," bw'agamba.
Naye teyakoma awo. Yakozesa okumanya kwe okw’ekikugu (clinical trial data analysis) okukola ekiwandiiko ky’abalwadde ekyandikung’aanyizza amawulire agakwata ku balwadde abalina obulwadde buno okwetoloola ensi yonna. Kino akiwaddeyo enkumi n’enkumi z’essaawa.
Lwaki ekiwandiiko ky’abalwadde nga kino kikulu?
Teebereza, olw’okuba endwadde zino tezitera kubaawo, tewali musawo n’omu ajja kusanga balwadde bangi nga bano. Kale amawulire agasinga obulungi ku ngeri obulwadde gye bukulaakulana, engeri gye bugendamu, n’engeri obubonero gye bukyuka buli mu balwadde n’ab’omu maka gaabwe. Amawulire gano bwe gakuŋŋaanyizibwa mu kifo kimu, gafuuka ekintu eky’omuwendo ennyo eri abanoonyereza abanoonya eddagala eppya. Kiggulawo ekkubo ly’obujjanjabi obupya.
Omusika gw’Essuubi
Ka tuddeyo ku mboozi ya Will. Leero, Will alina emyaka 11 egy’obukulu. Wadde nga tasobola kutambula, kwogera, wadde okulya ku kamwa, embeera ye eteredde. Ekisinga obukulu, obusobozi bwe obw’ebirowoozo bukyali bulungi nnyo. Maama we agamba nti asinga kwagala bya ssaayansi. Mu kukuba vidiyo gye buvuddeko, yamwenya n’akuba engalo ensajja okukakasa kino.
Ekitongole kya Cure Mito Foundation ekyatandikibwawo bazadde ba Will, kati kiwa ssente z’okunoonyereza ku bujjanjabi bw’obuzaale n’okuddamu okukozesa eddagala okulaba oba eddagala eddala eririwo liyinza okukozesebwa okujjanjaba obulwadde buno.
Ekyo kitegeeza nti bye tukola mu linnya lya Will biyinza okutaasa obulamu bw’omwana omulala alina obulwadde buno mu biseera eby’omu maaso. Ogwo gwe musika gw’aleka emabega. Emboozi zino zitugamba nti embeera ne bw’eba nzibu etya, singa twegatta ne tukola n’essuubi, tusobola okuleetawo enjawulo nnene. Olutalo abazadde bano lwe balwanirira omwana waabwe lutondawo ebiseera by’abaana abalala enkumi n’enkumi.
Obubaka Obutwala Awaka
- Okuzuulibwa nti olina obulwadde obutatera kulabika si y’enkomerero y’obulamu. Okumanya, obumu, n’essuubi bye bisinga amaanyi go.
- Bw’olaba enkyukakyuka yonna etali ya bulijjo, etategeerekeka mu nkula y’omwana wo oba mu nneeyisa ye, togibuusa maaso. Noonya amagezi okuva eri omusawo alina ebisaanyizo mu bwangu.
- Obuwagizi n‟okutegeera kwaffe kikulu nnyo eri amaka agabeera n‟embeera zino. Tobasuula ku bbali, wabula beera amaanyi gaabwe.
- Ebituukiddwaako n’amawulire g’abalwadde n’ab’omu maka gaabwe kintu kya muwendo nnyo mu kunoonyereza okuzuula obujjanjabi obupya.
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