Khawucinge nje, umntwana wakho omncinci uyancuma, ubaleka kwaye udlala. Ubukele ngovuyo lonke inyathelo lokukhula kwakhe. Xa ucinga ukuba yonke into ilungile, ngequbuliso indlela ahamba ngayo iyatshintsha, uqala ukuwa rhoqo. Ukubona into enjalo kuya kumoyikisa nawuphi na umama okanye utata, akunjalo? Oku kumalunga neentsapho ezimbalwa ezingazange zilahle ithemba nangona zijongene namava abuhlungu kangaka. Amabali abo asifundisa lukhulu.
Ibali lika "Will": Usuku Yonke into Yatshintsha
UWill yinkwenkwe encinci ethanda ukukrwada, ekhutheleyo, nekhululekileyo. Ngokutsho kukanina, uCasey, yonke into eyenzekayo ekukhuleni kwakhe yenzeka ngexesha elifanelekileyo. Xa uWill wayeneminyaka emibini ubudala, wayehamba kwaye edlala kakuhle, kodwa ngaphandle kwesizathu esicacileyo, waqala ukuwa rhoqo. Ngenye imini, wawa ngequbuliso.
Ukususela ngaloo mini, impilo kaWill yaqala ukuba mandundu ngokukhawuleza. Emva kovavanyo oluninzi, oogqirha ekugqibeleni bafumanisa ukuba uWill unesifo esingaqhelekanga. Esi sifo sabizwa ngokuba yi -'Leigh syndrome' .
Ngamafutshane, yonke iseli emzimbeni wethu inezityalo zamandla ezincinci ezibizwa ngokuba yi-mitochondria ezibonelela ngamandla. Kwesi sifo singaqhelekanga esibizwa ngokuba yi-Leigh syndrome, la maziko avelisa amandla asebenzi kakuhle ngenxa yotshintsho lwemfuza. UWill wayenotshintsho kwenye yezo jini, ebizwa ngokuba yi-SURF1. Le meko ikwiqela elikhulu lezifo ezibizwa ngokuba zizifo ze-mitochondrial.
UCasey ukhumbula elo xesha ngeemvakalelo ezinkulu. "Yayilixesha elinzima kakhulu ebomini bethu. Nangona omnye wabantwana bam wayengakwazi ukuhamba, omnye umntwana wam wayefunda ukuhamba." Khawucinge ngendlela loo mama amele ukuba waziva ngayo.
Idabi elingaphaya kokuba ngumzali
Xa oku kwenzeka kumntwana wabo, uCasey nomyeni wakhe, uDoug, abazange bahlale nje babukele. Baqala ukuphanda yonke into eyayikhona malunga nesifo. Njengoko uCasey esitsho, "Xa usiva ngesifo esingaqhelekanga esifana nesi, kuvakala ngathi ubomi bakho bonke buyawa phambi kwakho... uze emva koko ufunde yonke into ekhoyo malunga nesifo somntwana wakho. Kufana nokuya kwisikolo sezonyango uze uthathe ikhosi entsha ngokupheleleyo."
Bakuba beqaphele ukuba ulwazi kunye nezixhobo ezifumanekayo azikho kangako ngesi sifo, badibana nezinye iintsapho ezinabantwana abanesimo esifanayo baza baqalisa i- "Cure Mito Foundation." Injongo yoku yayikukunceda ekufumaneni unyango okanye unyango lwe-Leigh syndrome.
"Usapho lomntwana onesifo esingaqhelekanga, ukongeza ekunyamekeleni umntwana, singabameli abaphambili babo, singabahlengikazi ebusuku, siqokelela izigidi zeerandi. Asazi nokuba ezi zinto ziya kusebenza na. Kodwa, siyazama." - Casey Wollaben
Jonga imingeni abazali abajongene nayo kunye nendima enkulu abayidlalayo.
| Imingeni ejongene nabazali bomntwana onesifo esingaqhelekanga | Iindima ezahlukeneyo abazidlalayo |
|---|---|
| Ukungabikho kolwazi oluchanekileyo kunye nezixhobo ezichanekileyo malunga nesifo. | Umphandi: Ukufunda ngesi sifo ngokwakho. |
| Iindleko eziphezulu zemali zonyango kunye neenkonzo zenkxaso. | Ukuqokelela imali: Ukufuna imali yophando. |
| Uxinzelelo olukhulu lweemvakalelo kunye nokuzehlukanisa nabantu. | Ummeli: Ummeli wamalungelo kunye nomdla womntwana. |
| Unyango olukhethekileyo olufunekayo iiyure ezingama-24 ngosuku. | Umongikazi: Ukubonelela umntwana ngonyango oluyimfuneko ekhaya. |
"USophia" owaguqula intlungu yaba namandla
Ibali lomama ogama linguSophia Silber nalo linxulumene noku. Ukwakwibhodi yabalawuli be-'Cure Mito' Foundation. Kwiminyaka emithandathu eyadlulayo, intombi yakhe encinci uMiriam, kwiiveki ezimbalwa emva kokuzalwa, wasweleka yi-'Leigh syndrome'. Umothuko wokufa ngequbuliso, okungalindelekanga wawumkhulu kangangokuba uSophia uthi esi siganeko sahlulahlula ubomi babo baba ziinxalenye ezimbini: 'ngaphambi' kunye 'nasemva'. "Lonke igama, yonke iminithi yelo xesha ihlala isezintliziyweni zethu," utshilo.
Kodwa akazange aphelele apho. Wasebenzisa ulwazi lwakhe lobungcali (uhlalutyo lwedatha yovavanyo lweklinikhi) ukwenza irejista yezigulana eyayiza kuqokelela ulwazi malunga nezigulana ezinesi sifo kwihlabathi liphela. Uzinikele iiyure ezininzi kwesi siganeko.
Kutheni irejista yezigulana ibaluleke ngolu hlobo?
Khawucinge nje, kuba ezi zifo zinqabile, akukho gqirha uya kudibana nenani elikhulu lezigulana ezifana nezi. Ngoko ke ulwazi olungcono malunga nendlela esi sifo esikhula ngayo, indlela esihamba ngayo, kunye nendlela iimpawu ezitshintsha ngayo luxhomekeke kwizigulana nakwiintsapho zazo. Xa olu lwazi luqokelelwa kwindawo enye, luba sisixhobo esixabisekileyo kubaphandi abafuna amayeza amatsha. Luvula indlela yonyango olutsha.
Ilifa leThemba
Masibuyele kwibali likaWill. Namhlanje, uWill uneminyaka eli-11 ubudala. Nangona engakwazi ukuhamba, ukuthetha, okanye ukutya ngomlomo, imeko yakhe izinzile. Okubaluleke kakhulu, amandla akhe engqondo asesemhle kakhulu. Umama wakhe uthi unomdla kakhulu kwisayensi. Ngexesha levidiyo yakutshanje, wancuma waza waphakamisa ubhontsi ukuqinisekisa oku.
I-Cure Mito Foundation, eyaqalwa ngabazali bakaWill, ngoku ixhasa unyango lwezakhi zofuzo kunye nophando olusebenzisa amayeza ukuze kubonwe ukuba amanye amayeza akhoyo anokusetyenziswa na ukunyanga esi sifo.
Oko kuthetha ukuba oko sikwenzayo egameni likaWill kunokusindisa ubomi bomnye umntwana onesi sifo kwixesha elizayo. Lelo lilifa alishiya ngasemva. La mabali asixelela ukuba nokuba imeko inzima kangakanani na, ukuba sihlangana size sisebenze ngethemba, singenza umahluko omkhulu. Umlo aba bazali abawulwelayo ngenxa yomntwana wabo kukudala ikamva lamawaka abanye abantwana.
Umyalezo Wokuya Ekhaya
- Ukufunyanwa unesifo esingaqhelekanga asikokuphela kobomi. Ulwazi, ubunye, kunye nethemba zezona zinto zibalulekileyo kuwe.
- Ukuba ubona naluphi na utshintsho olungaqhelekanga nolungachazekiyo ekukhuleni okanye ekuziphatheni komntwana wakho, musa ukulutyeshela. Funa ingcebiso kugqirha ofanelekileyo ngoko nangoko.
- Inkxaso yethu nokuqonda kwethu kubaluleke kakhulu kwiintsapho eziphila nezi meko. Musa ukuzibeka bucala, kodwa yiba ngamandla azo.
- Amava nolwazi lwezigulane kunye neentsapho zazo luyimithombo exabisekileyo yophando lokufumana unyango olutsha.
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