Az alattomos Rett szindrómáról egy nagymama szemszögéből

DRÁGA KICSI FANNIKÁM
Kategoria: Mozgáskorlátozott és fogyatékkal élő látogatóinknak
"...a Rett-szindróma egy olyan összetett központi idegrendszeri mûködési zavar, amely csak lányokat érint. Nem lehet sem elkapni, sem pedig kinõni. Egyike azoknak a számos veleszületett betegségeknek, amelyeknek sem az okai, sem kezelése nem ismert."

 

"DRÁGA KICSI FANNIKÁM” - (egy aggódó nagymama gondolatail)

Amikor egy kisgyermek megszületik nagyon boldog a család. Meghallja az első szavakat: mama, papa stb., elkezd mászni, később önállóan sétál egyedül, a család még ragyog a boldogságtól.
Eltelik két-három év és egy szörnyű érzésem támad - miért nem fejlődik tovább ez a gyönyörű, mosolygós kislány? Miért marad el társaitól? Sok-sok miért?
Állandóan mandulagyulladása volt. Az orvosunk tanácsára hosszú kórházi bennfekvés után kivették a manduláját.

Ezután kezdett el - szinte azonnal hiperventillálni, és akkor azt hittük a műtéttől van. Nem tudott egyenletesen járni, csak kézenfogva, mintha szédülne egy kicsit. Talán egyensúlyzavara van ? tűnődtünk. Elvittük a fül-orr-gégészetre, de nem tudták megvizsgálni, mert nem kooperatív. Figyelemzavara lett, nem figyelt a nevére sem, de a hallása kitűnő volt, mert ha dúdoltam neki azonnal reagált.
Hiába olvasgattam a mesekönyveket, amit azelőtt nagyon szeretett, akkor még mutogatott az apró kis ujjacskájával a képekre. Fannika mindent elfelejtett, amit eddig tudott. Ezután kezdődött az orvostól-orvosig hajsza, az ismeretlen betegséggel szemben. Számos orvos kereste a baj okát, agyonvizsgálták a neurológusok, de nem állapítottak meg semminemű fejlődési rendellenességet. Később megtudtuk a betegség nevét a pécsi klinikán:

RETT SZINDRÓMA !!!   bővebben www.RIROSZ.hu-n
Betegségek leírása

A család egyszerre romokban hevert. A lányom nem tudta elfogadni ezt a betegséget, depressziós lett. Úgy éreztem, hogy ki kell, hogy gyógyítsam belőle, - ez talán valamennyire sikerült is, de ebben nagyon elfáradtam akkor. Az Interneten kerestem a kapcsolatokat nemcsak itthon, hanem külföldön is. Láttam az ún. IRSA lapot és láttam számos külföldön élő Rett- szindrómában szenvedő kicsi lányt.


Így találtam rá Kalmár Krisztinára, akinek nyugtatására és tanácsára hallgatva megismertem ezt a betegséget és segítségével megismertem Pokorny Katalint az alapítvány elnökét, aki szintén érintett ebben a betegségben kislányai révén. Számos olyan emberrel ismerkedtem meg, többek között a Szülő-orvos találkozó keretében, akinek rettes gyermeke van. Itt találkoztam genetikusokkal és orvosokkal is. Lehetett kérdéseket is feltenni a szülőknek. Itt találkoztam Dr. Vekerdi Zsuzsannával akitől tanácsot kértem, mivel Fannika járása kezdett romlani. Ez az állapotromlás úgy kezdődött, hogy elkezdett lábujjhegyen járni. Az ortopédián megműtőtték volna a sarkát, de hála a doktornőnek, botox kezelés adott, melynek hatására Fannika lába oldódott. Kapott egy tépőzáras kiscsizmát, ebben nagyon jó a járása. Heti kétszer jár HRG úszásra. Az óvodában masszírozzák a lábát. Sokat sétálunk vele, télen-nyáron,talán 2-3 órát is végig sétál kézenfogva.

Fannika jelenleg nem beszél, állandóan mosolyog, imádja a zenét, a BABAZENE (Raimond) megnyugtatja, ha sír,ha álmos, ha szomorú. Nem szobatiszta, de a szemével jelzi, ha ?dolga? van. Egyedül is képes száraz ételek elfogyasztására. Néha úgy érzem egyre értelmesebb, hiszen figyel és érdeklődik, talán beszélgethetnénk is egymással, hiszen komolyan a szemembe néz, és azt mondja: 
MAMA CSAK BESZÉLJ HOZZÁM, ÉN ÉRTEM AMIT MONDASZ, ÉS TE IS ÉRTED AMIT ÉN MONDOK NEKED.

Bízom abban, hogy talán az őssejt beültetéssel - ha az agysejteket nem is lehet stimulálni - de talán az izomsejtek beültetését igen. Beírtam az Informed honlapjára is, de ők sem nyugtattak meg az őssejt beültetéssel kapcsolatban.
REtt szindróma, őssejt beültetés
Az Orvos Válaszol 2005;10(4) InforMed
Szeretném megkérdezni az őssejt beültetéssel kapcsolatban, hogy ha a hajszálak őssejtjei alkalmasak hajátültetésre, valamint az egér bajusza neurológiai és idegi pótlást idézhet elő, egy Rett szindróma esetén őssejt beültetése nem javasolt?
Szeretettel és tisztelettel,
egy Rett szindrómás kislány mamája.
Mivel a hatvanas évek óta ismert Rett szindróma hátterében 1999-ben kimutatták a 28-as kromoszómán levő (xq28) MECP2 gén mutációját, a terápia is, ha majd valamikor lesz, ennek a korrigálását jelenti. Tehát génterápiát. De sajnos még nagyon gyermekcipőben járnak ezek a kísérletek, és ha eredményesek is, évtizedekig tartó vizsgálatok után lehet majd csak embereken alkalmazni.
Szendei, K.
Még olyan kicsi és olyan egészségesnek néz ki, 7 éves, talán lehet valamit kezdeni, vagy talán stagnálni ezt a fizikai állapotot. A kapcsolattartás nagyon fontos, mert tapasztalat, az nagyon kell. Kell egy olyan gyógypedagógus, mint a Kalmár Krisztina, aki nagyon sokat tesz a gyermekek fejlesztéséért és talán kaphatna némi állami támogatást, hogy vállalja olyan kislányok tanítását is, akik nem tudnak az óvodába vagy az iskolába eljárni.

Fontos lenne, ha Magyarországon is többet tudnának a Rett-szindróma kutatására fordítani, hátha még nem késő. Készülhetne egy dokumentumfilm is a rettes gyermekek mindennapi életéről, hogy országszerte megismerjék ezt a szörnyű betegséget, és az emberek segíteni tudjanak a különböző fórumokon keresztül. Hiszen ezek a kislányok is szeretnének úgy élni, mint egészséges kis társaik!!!
Írta: fodorsandorne
A cikk eredete partnerünktől, a kissviki alapítványtól!
Várom a válaszotokat a fejleményekről, egy kis apró megnyugtatás mindnyájunkra ráfér.

Erzsi

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