Kwabanye abazali babantwana abane-SMA, Nalu uluvo lwam kuwe

Bahlobo abathandekayo abasandula ukufumanisa isifo,

Mna nomfazi wam sahlala sothukile kwimoto yethu kwigaraji yokupaka esibhedlele. Ingxolo yesixeko yayihlokoma ngaphandle, kodwa ilizwe lethu kuphela lalinamagama angakhange athethwe. Intombi yethu eneenyanga ezili-14 ubudala yahlala esihlalweni sayo semoto, ikopisha inzolo eyayizalise imoto. Wayeyazi ukuba kukho into engalunganga.

Besisandula ukugqiba uthotho lweemvavanyo sijonga ukuba ngaba une-spinal muscular atrophy (SMA). Ugqirha usixelele ukuba akanakusichonga isifo ngaphandle kovavanyo lwemfuza, kodwa isimilo sakhe kunye nolwimi lwamehlo lusixelele inyani.

Kwiiveki ezimbalwa kamva, kuvavanyo lwemfuza lwabuyela kuthi luqinisekisa uloyiko lwethu: Intombi yethu yayinodidi lwe-2 SMA kunye neekopi ezintathu zokugcina ezilahlekileyo I-SMN1 Uhlobo.

Ngoku kuthweni?

Usenokuzibuza umbuzo ofanayo. Usenokuba uhleli ubambe ongezantsi njengoko besenza loo mini imbi. Unokudideka, ukhathazeke, okanye wothuke. Nokuba uziva ntoni, ucinga ntoni, okanye wenza ntoni - {textend} thatha ithutyana uphefumle kwaye uqhubeke ufunde.

Ukuchongwa kwe-SMA kuhamba neemeko eziguqula ubomi. Inyathelo lokuqala kukuzikhathalela.

Usizi: Kukho uhlobo oluthile lwelahleko olwenzeka ngolu hlobo lokufumanisa isifo. Umntwana wakho akazukuphila ubomi obuqhelekileyo okanye ubomi obucingele bona. Khathaza le lahleko kunye neqabane lakho, usapho kunye nabahlobo. Khala. Ukucacisa. Cinga.

Phinda unike igama: Yazi ukuba konke akulahlekanga. Amandla engqondo abantwana abane-SMA awachaphazeleki nangayiphi na indlela. Ngapha koko, abantu abane-SMA bahlala bekrelekrele kwaye banentlalontle. Ngapha koko, ngoku lukhona unyango olunokucothisa ukuqhubela phambili kwesi sifo, kwaye uvavanyo lweklinikhi lomntu luyenziwa ukufumana unyango.

Funa: Yakha inkqubo yenkxaso ngokwakho. Qala nosapho kunye nabahlobo. Bafundise indlela yokukhathalela umntwana wakho. Baqeqeshe ngokusetyenziswa komatshini, ukusebenzisa indlu yangasese, ukuhlamba, ukunxiba, ukuphatha, ukuhambisa, kunye nokondla. Le nkqubo yenkxaso iya kuba yinto ebalulekileyo ekukhathaleleni umntwana wakho. Emva kokuseka isangqa sangaphakathi sentsapho kunye nabahlobo, qhubeka phambili. Funa iiarhente zikarhulumente ezinceda abantu abakhubazekileyo.

Ukukhulisa: Njengokuba isitsho le nto, “Kufuneka unxibe imaski yeoksijini ngaphambi kokunceda umntwana wakho kwezabo.” Ingcinga efanayo iyasebenza apha. Fumana ixesha lokuhlala uqhagamshelene nabo bakufutshane kuwe. Zikhuthaze ukuba ufune ixesha lokonwaba, ukuba wedwa kunye nokubonisa. Yazi ukuba awuwedwa. Fikelela kuluntu lweSMA kwimidiya yoluntu. Gxila kwinto anokuyenza umntwana wakho kunaleyo angenako ukuyenza.

Cwangcisa: Jonga phambili kwinto enokuba ikamva okanye elingenayo, kwaye ucwangcise ngokufanelekileyo. Yiba nenxaxheba. Setha indawo yokuhlala yomntwana wakho ukuze bakwazi ukuhamba kuyo ngempumelelo. Okukhona umntwana one-SMA enokuzenzela, kokukhona kungcono. Khumbula, ukuqonda kwabo akuchaphazeleki, kwaye bayasazi isifo sabo kunye nendlela esibathintela ngayo. Yazi ukuba ukukhathazeka kuya kwenzeka njengoko umntwana wakho eqala ukuzithelekisa noontanga. Fumana oko kubasebenzelayo kwaye uyonwabele. Xa uqala ukhenketho losapho (iholide, usitya ngaphandle, njl. Njl.), Qiniseka ukuba indawo leyo iya kuhlala umntwana wakho.

Ummeli: Yimela umntwana wakho kwibala lemfundo. Banelungelo lokufumana imfundo kunye nendalo efanelekileyo kubo. Yiba neprojekhthi, ube nobubele (kodwa uqine), kwaye uhlakulele ubudlelwane obuhloniphekileyo nobunentsingiselo nabo baya kusebenza nomntwana wakho ngalo lonke usuku lwesikolo.

Yonwabele: Asiyiyo imizimba yethu - {textend} singaphezulu kakhulu kunoko. Jonga nzulu kubuntu bomntwana wakho kwaye ukhuphe okungcono kubo. Baya kuvuya kukuyolisa kwakho. Nyaniseka kubo malunga nobomi babo, iingxaki zabo kunye nempumelelo yabo.

Ukukhathalela umntwana one-SMA kuya kukomeleza ngeendlela ezingaziwayo. Iya kucela umngeni kuwe nakwabo bonke ubudlelwane onabo ngoku. Iya kuzisa icala lobuchule lakho. Iya kukhupha igorha likuwe. Ukuthanda umntwana one-SMA ngokungathandabuzekiyo kuya kukusa kuhambo ongazange wazi ukuba lukhona. Kwaye uya kuba ngumntu ongcono ngenxa yayo.

Unokwenza oku.

Ozithobileyo,

UMichael C. Casten

UMichael C. Casten uhlala nomfazi wakhe nabantwana abathathu abahle. Unesidanga seBachelor kwiPsychology nakwisidanga senkosi kwimfundo yamabanga aphantsi. Ufundise ngaphezulu kweminyaka eli-15 kwaye uyakuthanda ukubhala. Ungumbhali-mbhali we Ikhonkco likaElla, ebalisa ngobomi bomntwana wakhe omncinci nge-spinal muscular atrophy.