Imajin, yu smɔl pikin de smayl, de rɔn ɛn ple. Yu de gladi fɔ wach ɛvri step we i de divɛlɔp. Jɔs we yu tink se ɔltin fayn, wantɛm wantɛm di we aw i de waka chenj, i kin bigin fɔ fɔdɔm bɔku tɛm. If yu si sɔntin lɛk dat, dat go mek ɛni mama ɔ papa fred, nɔto so? Dis na bɔt sɔm famili dɛn we nɔ ɛva giv ɔp pan ɔl we dɛn bin gɛt dis kayn tin we bin de mek dɛn at pwɛl. Dɛn stori dɛn de tich wi bɔku tin.
"Will's" Stori: Di De we Ɔltin Chenj
Wil na smɔl bɔbɔ we rili de du bad, we de du tin tranga wan, ɛn we de tɔk to ɔda pipul dɛn. Akɔdin to in mama, Kesi, ɛvri maylston we i bin de divɛlɔp bin apin rayt di rayt tɛm. We Wil bin ol lɛk tu ia so, i bin de waka ɛn ple fayn, bɔt fɔ no rizin, i bigin fɔ fɔdɔm bɔku tɛm. Wan de, i fɔdɔm wantɛm wantɛm.
Frɔm da de de, Wil in wɛlbɔdi bigin fɔ pwɛl kwik kwik wan. Afta bɔku tɛst dɛn, di dɔktɔ dɛn bin kam fɔ no se Wil gɛt wan sik we nɔ kin apin so ɔltɛm. Dɛn bin kɔl di sik `Leigh syndrome` .
Fɔ tɔk am simpul wan, ɛvri sɛl na wi bɔdi gɛt smɔl pawa plant dɛn we dɛn kɔl maytochondria we de gi ɛnaji. Insay dis sik we nɔ kin bɔku we dɛn kɔl Leigh syndrome, dɛn sɛnta ya we de mek ɛnaji nɔ de wok fayn bikɔs ɔf wan jɛnɛtik muteshon. Will bin gɛt wan muteshon na wan pan dɛn jin dɛn de, we dɛn kɔl SURF1. dis kכndyushכn de pan wan big grup fכ sik dεm we dεn kכl maytochכndrial sik dεm.
Kesi mɛmba da tɛm de wit big big filin. "Na bin rili tranga taim fo wi laif. Wail wan of mai pikin no fit waka, mai oda pikin bin de lan fo waka." Imajin aw da mama de go dɔn fil.
Wan fɛt we pas fɔ bi mama ɔ papa
We dis bin apin to dɛn pikin, Kesi ɛn in man we nem Dɔg, nɔ bin jɔs sidɔm ɛn wach. Dɛn bigin fɔ du risach bɔt ɔltin we de fɔ no bɔt di sik. As Casey se, "We yu yɛri bɔt wan sik we nɔ kin bɔku lɛk dis, i kin tan lɛk se yu ɔl layf de fɔdɔm bifo yu... ɛn afta dat yu fɔ lan ɔltin we de fɔ no bɔt yu pikin in sik. I tan lɛk se yu go na mɛdikal skul ɛn tek wan ɔl nyu kɔs."
We dɛn no aw smɔl infɔmeshɔn ɛn tin dɛn we dɛn kin gɛt bɔt di sik, dɛn jɔyn fɔs wit ɔda famili dɛn we gɛt pikin dɛn we gɛt di sem sik ɛn bigin di "Cure Mito Foundation." Di gol fɔ dis fawndeshɔn na fɔ ɛp fɔ fɛn tritmɛnt ɔ mɛrɛsin fɔ di sik we dɛn kɔl Leigh syndrome.
"Famili we pikin we get sik we no de rare, apat frɔm we wi de kia fɔ di pikin, wi na di men advatayz fɔ dɛn, fɔ bi nɔs na nɛt, fɔ gɛda bɔku bɔku mɔni. Wi nɔ ivin no if dɛn tin ya go wok. Bɔt, wi de tray." - Kesi Wollaben, we de wok
Luk di prɔblɛm dɛn we mama ɛn papa dɛn lɛk dis kin gɛt ɛn di big big wok we dɛn kin du.
| Chalenj dɛn we mama ɛn papa dɛn we gɛt pikin we gɛt sik we nɔ kin bɔku kin gɛt | Di difrɛn wok dɛn we dɛn kin du |
|---|---|
| Nɔr gɛt kɔrɛkt infɔmeshɔn ɛn risɔs bɔt dis sik. | Risachman: Fɔ lan bɔt di sik fɔ yusɛf. |
| Ay faynɛns kɔst fɔ tritmɛnt ɛn sɔpɔt savis. | Fɔ gɛda mɔni: Fɔ fɛn mɔni fɔ du risach. |
| Siriɔs imɔshɔnal strɛs ɛn soshal ayzolayshɔn. | Advoketi: Advoketi fɔ di rayt ɛn intɛres fɔ di pikin. |
| Speshal mɛrɛsin we dɛn nid fɔ kia fɔ 24 awa ɛvride. | Nɔs: Fɔ gi di pikin mɛrɛsin na os. |
"Sophia" we tɔn pen to trɛnk
Di stori bɔt wan mama we nem Sɔfia Silba sɛf gɛt sɔntin fɔ du wit dis. I de bak na di bod ɔf dayrɛktɔ dɛn fɔ di `Cure Mito` Fɔdayshɔn. Siks ia bifo, in smɔl gyal pikin Miriam, sɔm wiks afta dɛn bɔn am, bin day wit `Leigh syndrome`. Di shɔk we da day de we dɛn nɔ bin de ɛkspɛkt bin so big dat Sofia se di tin we apin bin sheb dɛn layf to tu pat: `bifo` ɛn `afta`. I se: “Ɛvri wɔd, ɛvri minit fɔ da tɛm de de na wi at sote go.”
Bɔt i nɔ bin stɔp de. I yuz in prɔfɛshɔnal no (klinikal trial data analisis) fɔ mek wan pasɛnt rɛjista we go gɛda infɔmeshɔn bɔt pasɛnt dɛn we gɛt dis sik ɔlsay na di wɔl. I dɔn volontia fɔ bɔku bɔku awa fɔ dis.
Wetin mek i impɔtant fɔ mek pɔsin rɛjista di pɔsin we sik lɛk dis?
Imajin, bikɔs dɛn sik ya nɔ kin bɔku, no wan dɔktɔ nɔ go mit bɔku bɔku pipul dɛn lɛk dis. So di bɛst infɔmeshɔn bɔt aw di sik kin kam, aw i kin go, ɛn aw di sayn dɛn kin chenj na di wan dɛn we sik ɛn dɛn famili. We dɛn gɛda dis infɔmeshɔn na wan ples, i kin bi sɔntin we rili impɔtant fɔ di wan dɛn we de du risach we de luk fɔ nyu mɛrɛsin dɛn. I de mek di rod fɔ mek dɛn gɛt nyu tritmɛnt dɛn.
Legacy of Op
Mek wi go bak to Will in stori. Tide, Wil ol 11 ia. Pan ɔl we i nɔ ebul fɔ waka, tɔk, ɔ it wit mɔt, in kɔndishɔn nɔ de chenj. Di tin we impɔtant pas ɔl na dat, di we aw i de tink stil rili fayn. In mama se na sayɛns intres pas ɔl. We dɛn bin de kɔl am vidio i nɔ tu te yet, i bin smayl ɛn gi am tumbu fɔ kɔnfirm dis.
Di Cure Mito Foundation, we Will in mama ɛn papa bin stat, de gi mɔni naw fɔ du jin tɛrapi ɛn fɔ du risach fɔ mek dɛn yuz ɔda mɛrɛsin dɛn we dɔn de fɔ mɛn di sik.
Dat min se wetin wi de du wit Wil in nem kin sev ɔda pikin we gɛt dis sik in layf tumara bambay. Na di lɛgsi we i lɛf biɛn. Dɛn stori ya de tɛl wi se ilɛk aw tin tranga, if wi kam togɛda ɛn wok wit op, wi kin mek big difrɛns. Di fɛt we dɛn mama ɛn papa ya de fɛt fɔ dɛn pikin de mek bɔku bɔku ɔda pikin dɛn gɛt tumara bambay.
Mɛsej we dɛn kin kɛr go na os
- Fɔ no se yu gɛt wan sik we nɔ kin bɔku, nɔto di ɛnd fɔ layf. Fɔ no sɔntin, fɔ gɛt wanwɔd, ɛn fɔ gɛt op na di tin dɛn we yu go ebul fɔ du pas ɔl.
- If yu notis ɛni chenj we nɔ kɔmɔn, we yu nɔ ɛksplen to yu pikin in divɛlɔpmɛnt ɔ bihayvya, nɔ ignore am. Aks advays frɔm dɔktɔ we sabi du di wok wantɛm wantɛm.
- Wi sɔpɔt ɛn ɔndastandin rili impɔtant to famili dɛn we de liv wit dɛn kayn tin ya. Nɔ marginalize dɛn, bɔt bi dɛn trɛnk.
- Di ɛkspiriɛns ɛn infɔmeshɔn we di sik pipul dɛn ɛn dɛn famili gɛt na impɔtant tin fɔ du risach fɔ fɛn nyu tritmɛnt.
💬 Comments (0)
No kɔmɛnt nɔ de yet. Ad yu kɔmɛnt ya fɔ di fɔs tɛm.
Ad yu kɔmɛnt