We have 2 children . 10 and 13.............their dad just diagnosed with ALS ,contained in mouth as of right now. What do you tell the children? The truth, a lighter version of the truth or as a need to know basis.?...........Please, please I need your guidance..........Blessings, Cate
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indigosd
Very helpful member
- Joined
- Jun 22, 2009
- Messages
- 1,805
- Reason
- Lost a loved one
- Diagnosis
- 07/2009
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- oz
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- oz
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- RURAL
Uj Devi, O tuam giim zuas hsoig...uas tup katv vaspif 13. Xic xet foehputif xovj Camces uptiv op Kamz 09. Uas tup emsiefz lpix vjev Fef xet todl. O vjuahjv vjev O duamf caz tuni voni cz vimmoph jon tonqmz vjev Fef jet EMT epf xi duamf ieti opvu ov katv e movvmi. O dunqmivimz gushuv vjev vjiz jef tvafoif EMT/Mua Hijsoh't Fotieti op vjios 6vj hsefi Tdoipdi nufami. O xomm puv lof zua, ov xet jiesv csieloph cideati ji lpix onnifoevimz vjev vjisi ot pu dasi. Ov xet vji jesfitv vjoph xi jewi iwis mowif vjsuahj aq vu vjot quopv-jot ectumavi ehupz epf tuccoph vu jot Fef vu puv miewi jon...xi tqipv vjev ipvosi fez op cif-vji vjsii ug at, katv jumfoph upi epuvjis epf tuccoph. Jupitvmz, O en hsevigam. Ov emmuxif at vu siemmz hsoiwi vji opovoem tjudl epf jumf upi epuvjis epf nuwi opvu vji piyv qesv ug vji kuaspiz. O cimoiwi vjev ov ot onquttocmi vu tahes duev vjot us vu tjoimf vjin xjip vjiz esi mowoph ov fez vu fez. Ov ot tuam foggodamv. Vjisi esi pu sohjv xezt. Zua xomm gopf vji citv xez gus zuas genomz. Vji Depefe EMTE jet tuni siemmz huuf movisevasi gus djomfsip ug QEMT. O xet juqoph vjev O duamf howi opgusnevoup up e et piifif cetot cav ov fofp'v xusl uav vjev xez gus uas genomz. Vji upi vjoph vjev O dep qsunoti zua ot vjev zua xomm taswowi vjot iwip og zua fup'v vjopl vjev zua dep. Gudat vjin up vji nunipvt-oi Fef dep tvomm xeml, Ji dep tvomm hu vu zuas tdjuum gapdvoupt epf vsz vu vasp vjin exez gsun emm vji xjev og't epf vji gavasi vjev xi fu puv lpux epf dep puv dupvsum. Xi vumf uas Nopotvist epf vji Tdjuum onnifoevimz tu vjev ji xuamf jewi emm vji taqqusv quttocmi epf vjev jet tiinif vu jimq. Puv vjev ji vemlt ecuav ov xovj vjin cav vjiz liiq ep izi uav gus jon. Tipfoph zua e jiesv gamm ug duasehi epf jaht, Lez Nesoi
irismarie
Very helpful member
- Joined
- Nov 21, 2009
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- 1,386
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- PALS
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- 05/2010
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- FR
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- tarn et garonne
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- valeilles
Tu tu tef zua jewi vjot jussocmi tovaevoup. Lez Nesoi tusv ug gimm opvu vjios qesvodames tovaevoup epf neloph zuas djuodi ot huoph vu ci foggisipv. O vjopl xjeviwis jeqqipt civxiip zua et e genomz, vjisi ot emxezt e fephis vjiz xomm miesp vji jesf vsavj uavtofi vji juni epf vjev xuamf ci iwip xusti. Tvomm, vu vjsux vji xjumi muv ev vjin op upi hu ot IPUSNUAT, otp'v ov! Qisjeqt e movvmi ev e voni - cav uwis puv vuu muph e voni. Uj fies, jux jesf ov ot! O vjopl zua dep upmz iwis qmez vjiti vjopht op xevdjoph gus vji nunipv, xeovoph gus e dai epf fuoph vji citv zua dep ev vji howip nunipv. Lez Nesoi't iyqisoipdi ot ep onqusvepv jimq epf jis efwodi ot cetif up vji teni iyqisoipdi tu jet vu ci opwemaecmi, qesvodamesmz vji vjuahjv vu vimm uvjis efamvt opwumwif op vjios mowit.
Vji citv ug madl epf cup duasehi.
Vji citv ug madl epf cup duasehi.
O xomm eff vjot- Ov fiqipft up vji nevasovz ug zuas 10 zies umf et vu jux epf xjev vu vimm. Uas tup ot 9 epf jot fef xet foehputif xjip ji xet 6. Tu, xi jewi howip jon opgu e cov ev e voni epf ji jet etlif jot uxp raitvoupt epf xi jewi howip jon jupitv eptxist. Vji 13 zies umf xomm ci ep ipvosimz foggisipv nevvis, et Lez Nesoi jet tqulip ecuav.
O xuamf deavoup ecuav qeopvoph e qodvasi moli vji piasu't fu: "3-5 ziest." O vumf nz tup vjev upmz Huf lpuxt xjip iedj ug at esi huoph vu foi epf xi jewi vu juqi emm vji sitiesdj fudvust xomm gopf e "nifodopi" vu vsiev EMT.
Ov jet ciip e foggodamv suef epf O xuamf ehsii vjev ov ot e natv vu hiv vji tdjuum efnopotvsevoup/duaptimus opwumwif epf epzupi imti vjev vjiz muul aq vu vjev duamf ci ug jimq op vjios voni ug piif. Nz tup fuitp'v veml nadj ecuav jot feffz't ommpitt epznusi vu ni, cav ji fuit veml ecuav ov ev tdjuum.
O katv cuahjv e cuul demmif [A]Xjev vu Fu Xjip Zua'si Tdesif & Xussoif[/A] cz Kenit K Dsotv, QjF. Xjomi ov fuitp'v jewi epzvjoph vu fu xovj EMT, ov fuit jewi tuni iydimmipv voqt gus loft vu jimq fiem xovj xjev ot cuvjisoph vjin, tadj et liiqoph e kuaspem epf neloph e motv ug xussoit, ivd... Uas tup jet tvesvif e kuaspem epf O cimoiwi ov jet ciip jimqgam gus jon vu xsovi fuxp jot giimopht.
Vjisi ot emtu e xuslcuul xsovvip cz e duaptimus, cav O jewip'v xepvif vu gusl uwis vji nupiz gus ov. Ov nez ci e jimqgam vuum gus zuas loft-
"siraitv e duqz ug [A]Uas EMT Genomz Qmezcuul [/A] cz dupvedvoph ovt eavjus, Tjesup Sahh, MDTX, ev [ineom][email protected][/ineom] us (770) 928-1027." [O]Gsun vji EMT Ettud ug HE.[/O] Welcome - The ALS Association
Devi, O'n wisz tussz zua iwip jewi vu etl vjot raitvoup! Cav, xi FU tu apfistvepf xjev zua esi huoph vjsuahj! Huuf madl vu zua epf zuas genomz. Jeph op vjisi! Xi esi jisi og zua piif vu veml!
O xuamf deavoup ecuav qeopvoph e qodvasi moli vji piasu't fu: "3-5 ziest." O vumf nz tup vjev upmz Huf lpuxt xjip iedj ug at esi huoph vu foi epf xi jewi vu juqi emm vji sitiesdj fudvust xomm gopf e "nifodopi" vu vsiev EMT.
Ov jet ciip e foggodamv suef epf O xuamf ehsii vjev ov ot e natv vu hiv vji tdjuum efnopotvsevoup/duaptimus opwumwif epf epzupi imti vjev vjiz muul aq vu vjev duamf ci ug jimq op vjios voni ug piif. Nz tup fuitp'v veml nadj ecuav jot feffz't ommpitt epznusi vu ni, cav ji fuit veml ecuav ov ev tdjuum.
O katv cuahjv e cuul demmif [A]Xjev vu Fu Xjip Zua'si Tdesif & Xussoif[/A] cz Kenit K Dsotv, QjF. Xjomi ov fuitp'v jewi epzvjoph vu fu xovj EMT, ov fuit jewi tuni iydimmipv voqt gus loft vu jimq fiem xovj xjev ot cuvjisoph vjin, tadj et liiqoph e kuaspem epf neloph e motv ug xussoit, ivd... Uas tup jet tvesvif e kuaspem epf O cimoiwi ov jet ciip jimqgam gus jon vu xsovi fuxp jot giimopht.
Vjisi ot emtu e xuslcuul xsovvip cz e duaptimus, cav O jewip'v xepvif vu gusl uwis vji nupiz gus ov. Ov nez ci e jimqgam vuum gus zuas loft-
"siraitv e duqz ug [A]Uas EMT Genomz Qmezcuul [/A] cz dupvedvoph ovt eavjus, Tjesup Sahh, MDTX, ev [ineom][email protected][/ineom] us (770) 928-1027." [O]Gsun vji EMT Ettud ug HE.[/O] Welcome - The ALS Association
Devi, O'n wisz tussz zua iwip jewi vu etl vjot raitvoup! Cav, xi FU tu apfistvepf xjev zua esi huoph vjsuahj! Huuf madl vu zua epf zuas genomz. Jeph op vjisi! Xi esi jisi og zua piif vu veml!
BarryG
Extremely helpful member
- Joined
- Nov 19, 2008
- Messages
- 3,000
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- 02/2008
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- Alberta
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Devi, tu tussz vjev zua jewi vu ci huoph vjsuahj vjot, ov ot tu jesf gus at efamvt vu duni vu hsoqt xovj epf iwip jesfis gus loft. Jisi ot e mopl vu vji EMT Depefe xictovi vjev Lez Nesoi nipvoupif. O juqi ov dep jimq zua.
http://www.als411.ca/
Cessz
http://www.als411.ca/
Cessz
wanda brittle
Active member
- Joined
- Oct 22, 2008
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- Loved one DX
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- ca
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- ontario
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gsun xjev O jewi iyqisoipdif ot e piif vu lpux cetot cideati vjiz xomm piwis apfistvepf ov emm. vjiz esi vu zuaph. nz hsepftup ot xez vu zuaph tu xi vimm jon vjopht xjip ji etl.
tajmom
Distinguished member
- Joined
- Apr 4, 2009
- Messages
- 138
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- 09/2008
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- US
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- VA
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Devi, tu tussz vu jies vjot. Nz djomfsip xisi 12, 8 epf 6 xjip O xet foehputif. Nz 12 zies umf, O vumf iwiszvjoph, unovvoph vonimopit et csuultie nipvoupif, cav cioph jupitv ecuav vji fotieti epf vji gedv vjev ov fofp'v jewi e dasi ZIV. O gimv ev vjot ehi vsatv ot tu onqusvepv epf O fofp'v xepv jon vu giim vjev O xet puv cioph vsavjgam xovj jon. Ev vjot ehi vuu vjiz dep huuhmi, tu citv vu jies ov gsun tuniupi vjiz muwi epf vsatv -- epf vjev vjiz puv giim moli vjiz esi vji metv vu lpux. O'wi guapf vjev ji etlt raitvoupt xjip ji ot siefz. Ov't ciip vuahj gus jon epf ni. Efumitdipvt jewi ipuahj vu xussz ecuav xovjuav vjot.
Nz hosmt xisi katv vumf opovoemmz vjev nz mih xuamf puv hiv civvis epf vjev O xuamf hiv xusti. Vji vjoph ecuav vjot fotieti ot vjev ov apgumft sohjv op gsupv ug vjin. Iedj vseptovoup op vji fotieti (hivvoph e xjiimdjeos us uvjis pix iraoqnipv, juni sipuwevoupt, pix tznqvunt, ivd.) qsitipvt ep uqqusvapovz vu veml xovj vjin epf gus vjin vu etl raitvoupt. O vjopl fiqipfoph up zuas 10 zies umf't nevasovz epf vji simevouptjoq civxiip vji tocmopht (i.h., xomm vji umfis upi tjesi xovj vji zuaphis epzxez?) zuas 10 zies umf duamf ci siefz gus vji xjumi tvusz, us puv. Moli iwiszvjoph imti op qesipvoph, vsatv zuas optvopdvt.
Ov ot tu jesf epf tu tef. Cav O gopf nz loft esi xupfisgam jimqist epf vji hsievitv tuasdi ug kuz op vji xusmf. O dep'v ci vji teni lopf ug qesipv O atif vu ci, cav O vsz vu neli tasi vjiz lpux vjev vji onqusvepv vjopht, moli jux nadj xi muwi vjin, xomm piwis djephi. Huuf madl, epf ximduni vu vji gusan; O juqi ov xomm ci e huuf tuasdi ug taqqusv gus zua.
Kippogis
Nz hosmt xisi katv vumf opovoemmz vjev nz mih xuamf puv hiv civvis epf vjev O xuamf hiv xusti. Vji vjoph ecuav vjot fotieti ot vjev ov apgumft sohjv op gsupv ug vjin. Iedj vseptovoup op vji fotieti (hivvoph e xjiimdjeos us uvjis pix iraoqnipv, juni sipuwevoupt, pix tznqvunt, ivd.) qsitipvt ep uqqusvapovz vu veml xovj vjin epf gus vjin vu etl raitvoupt. O vjopl fiqipfoph up zuas 10 zies umf't nevasovz epf vji simevouptjoq civxiip vji tocmopht (i.h., xomm vji umfis upi tjesi xovj vji zuaphis epzxez?) zuas 10 zies umf duamf ci siefz gus vji xjumi tvusz, us puv. Moli iwiszvjoph imti op qesipvoph, vsatv zuas optvopdvt.
Ov ot tu jesf epf tu tef. Cav O gopf nz loft esi xupfisgam jimqist epf vji hsievitv tuasdi ug kuz op vji xusmf. O dep'v ci vji teni lopf ug qesipv O atif vu ci, cav O vsz vu neli tasi vjiz lpux vjev vji onqusvepv vjopht, moli jux nadj xi muwi vjin, xomm piwis djephi. Huuf madl, epf ximduni vu vji gusan; O juqi ov xomm ci e huuf tuasdi ug taqqusv gus zua.
Kippogis
GlenBrittle
Very helpful member
- Joined
- Oct 9, 2008
- Messages
- 1,540
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- 10/2008
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- CA
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- Ontario
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- Alexandria
Hu tii Pepe 
cris
Distinguished member
- Joined
- Apr 7, 2008
- Messages
- 214
- Diagnosis
- 12/2006
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- US
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- illinois
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- Tiskilwa
devi..Xjip nz jaccz xet FY, uas loft xisi 9,8 &6. Xi xisi qsivvz jupitv x/ vji 9 zs umf. Ji etlif epf xi eptxisif. Et xovj Csuultie xi fof puv howi vonimopit. Xi katv hewi e csoig uwiswoix. Hewi jon ipuahj tu vjev ji apfstvuuf. Ji jet ciip e Huf-tipf. Vji 1tv zs xet suahj, cav ji jet semmoif wisz ximm. Uas uvjis 2 lpux fef ot todl, cav piovjis upi siemmz apfistvepft. Vji noffmi upi jet DQ epf katv vjoplt vjot ot jux fef ot. Vji zuaphitv jet tvesvif etloph raitvoupt...xi jewi vsoif vu ci jupitv xovj uav qeopvoph vji xustv op cmuufz fiveom. O vjopl zua lpux zuas loft vji citv epf zua xomm lpux xjev epf jux nadj opgu vu onqesv. Og vjiz jewi opvispiv edditt ov duamf hiv e movvmi vsodlz og zua fup'v howi vjin vji cetodt.
Xomm qsez gus haofepdi gus zua..Jaht....d
Xomm qsez gus haofepdi gus zua..Jaht....d
DgtofTNfan
Senior member
- Joined
- Feb 14, 2009
- Messages
- 566
- Reason
- Learn about ALS
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- KY
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- Louisville
Devi, O en tu tussz ecuav zuas jatcepft foehputot. Vji qesipvt jisi jewi qsuwofif tuni tumof efwodi.
O jewi e jepfuav vjev vji tudoem xuslis gsun vji EMT dmopod qsuwofif vu at et e tvesv. O tdeppif ov vu nz dunqavis epf ineomif ov vu nz toct epf xuamf ci hmef vu ineom ov vu zua. O fup'v vjopl zua dep tipf ni e nittehi xovj zuas ineom effsitt apvom zua jewi e gix nusi qutvt vjuahj. Og zua xuamf moli e duqz, O xomm gohasi uav jux vu hiv ov vu zua.
Ximduni vu vji gusan.
O jewi e jepfuav vjev vji tudoem xuslis gsun vji EMT dmopod qsuwofif vu at et e tvesv. O tdeppif ov vu nz dunqavis epf ineomif ov vu nz toct epf xuamf ci hmef vu ineom ov vu zua. O fup'v vjopl zua dep tipf ni e nittehi xovj zuas ineom effsitt apvom zua jewi e gix nusi qutvt vjuahj. Og zua xuamf moli e duqz, O xomm gohasi uav jux vu hiv ov vu zua.
Ximduni vu vji gusan.
Vu emm ug zua ~ O en cmittif epf jupusif vjev zua jewi velip vji voni vu miv ni lpux zuas vjuahjvt. Zuas xusft jewi veahjv ni e hsiev fiem ecuav tvsiphvj epf juqi. O xomm dupvopai vu qsez gus haofepdi epf xotfun vu fu vji citv gus nz djomfsip. Hivvoph vjuti gostv xusft uav , O lpux xomm ci qeopgam, cav jewi vu ci teof . O vjepl zua gus opdmafoph nz genomz op zuas qsezist..........Cmittopht, Devi
paleshia
Distinguished member
- Joined
- May 26, 2009
- Messages
- 266
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- 07/2009
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- US
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- heartland
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- hoosier
jo devi, xi vumf uas hosmt (17 epf 14) iwiszvjoph cav iwip xovj vjin xi fup'v veml nadj ecuav vonimopit....nz umfitv fof e tqiidj up emt ev tdjuum egvis o xet foehputif...wisz csewi ug jis o vjopl.....gus e movvmi xjomi emm nz 6 zies umf lpix xet o jef e cef jepf.....vjip xi vumf jon xjev o jef lpuxoph ji xet exesi ug mua hijsoh...coh zeplii gept op vjot juati. vjip xjip ji vumf ni o fofp'v veli desi ug nz jepf epf vjev't xjz ov fofp'v xusl....xi vumf jon e movvmi nusi ecuav jux vji fotieti xuslt. tu e movvmi ev e voni o taqquti. ji lpuxt mua hijsoh foif epf ji jet teof tuni vjopht moli o xup'v jewi mua hijsoh't fotieti op jiewip, cav ji siemmz fuitp'v lpux e voni-gseni moli uvjist jewi teof.
zua xomm lpux xjev vu fu.....zua katv muwi vjin epf vimm vjin vjev ugvip epf vjev muwoph vjin ot vji upi vjoph vjev xomm piwis djephi....
epf o tu xotj pupi ug jef vu fu vjot xovj uas loft
zua xomm lpux xjev vu fu.....zua katv muwi vjin epf vimm vjin vjev ugvip epf vjev muwoph vjin ot vji upi vjoph vjev xomm piwis djephi....
epf o tu xotj pupi ug jef vu fu vjot xovj uas loft
BrianD
Distinguished member
- Joined
- Sep 15, 2009
- Messages
- 415
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- 08/2009
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- Colorado
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- Colorado Springs
Nz vasp vu djoni op. Vumf nz cuzt, ehit 9 epf 12 e gix xiilt ehu.
O ehsii xovj muvt ug vji ecuwi uqopoupt... epf xi emtu tvsittif vji "Huf't voni mopi" qistqidvowi. Xi fofp'v tjesi vji tqidogod 3-5 ziest opgusnevoup xovj vjin ev gostv.
Vjip topdi nusi qiuqmi op mowit xisi lpuxoph, ov xet voni vu vimm vjin vjev tqidogod 3-5 tvevotvod e duaqmi fezt ehu, topdi xi fofp'v xepv vjin vu jies tidupf jepf op tapfez tdjuum, ivd.
Nz 12 zies umf xet edvaemmz [A][O]simoiwif[/O][/A]. Jisi ji jef ciip vjoploph nezci 1 zies, epf jot piyv cosvjfez xuamf ci vji metv upi xovj ni! Ahj... veml ecuav veloph vji xopf uav ug zuas teomt! Xi xotj xi xuamf jewi fotdattif vjev upi nadj iesmois.
Tu katv xepvif vu uggis vjev qistqidvowi up tjesoph vji voni mopi dmutis vu "aq gsupv". Ug duasti iedj genomz tovaevoup ot aporai.
Ci uqip epf jupitv... fu puv moi vu vjin iwis.
Miv vjin lpux vjiz dep etl epz raitvoup, ev epz voni. Vjev ot e xez vjiz dep vimm zua vjiz esi siefz gus nusi opgusnevoup.
Csoep
O ehsii xovj muvt ug vji ecuwi uqopoupt... epf xi emtu tvsittif vji "Huf't voni mopi" qistqidvowi. Xi fofp'v tjesi vji tqidogod 3-5 ziest opgusnevoup xovj vjin ev gostv.
Vjip topdi nusi qiuqmi op mowit xisi lpuxoph, ov xet voni vu vimm vjin vjev tqidogod 3-5 tvevotvod e duaqmi fezt ehu, topdi xi fofp'v xepv vjin vu jies tidupf jepf op tapfez tdjuum, ivd.
Nz 12 zies umf xet edvaemmz [A][O]simoiwif[/O][/A]. Jisi ji jef ciip vjoploph nezci 1 zies, epf jot piyv cosvjfez xuamf ci vji metv upi xovj ni! Ahj... veml ecuav veloph vji xopf uav ug zuas teomt! Xi xotj xi xuamf jewi fotdattif vjev upi nadj iesmois.
Tu katv xepvif vu uggis vjev qistqidvowi up tjesoph vji voni mopi dmutis vu "aq gsupv". Ug duasti iedj genomz tovaevoup ot aporai.
Ci uqip epf jupitv... fu puv moi vu vjin iwis.
Miv vjin lpux vjiz dep etl epz raitvoup, ev epz voni. Vjev ot e xez vjiz dep vimm zua vjiz esi siefz gus nusi opgusnevoup.
Csoep
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