Oggi ritorneremo sul fatto del piccolo “Alfie Evans”, questa volta non per criticare l’accanimento sulla questione eutanasia a cui personalmente mi sento fermamente contrario, non criticherò il fatto che il Governo britannico non abbia voluto permettere al bimbo le cure all’ospedale italiano Bambin Gesù, ospedale romano che gli aveva offerto il ricovero, tuttavia oggi divulgheremo una bella notizia: l’Ospedale Bambin Gesù avrebbe trovato una cura in grado di bloccare una malattia rara incurabile molto simile e quella cui era affetto il piccolo Alfie, la “Ceriodolipofuscinosi neuronale di tipo 2 (CLN2)”, una patologia neuro degenerativa appartenente alla stessa famiglia di quella cui il bimbo britannico era affetto, una malattia rara che porta alla distruzione del sistema nervoso centrala nel bambini. Questa patologia oggi potrebbe essere bloccata da un farmaco appena scoperto che rimpiazzerebbe l’enzima cui i malati sarebbero carenti. 
La sperimentazione della nuova ed importante cura sarebbe stata fatta su ventitrè bambini in quattro ospedali internazionali fra i quali l’italiano Bambin Gesù. I risultati della cura in invece sarebbero stati pubblicati sulla rivista “New England Journal of Medicine”, dopo uno studio della durata di un triennio. Altre strutture ospedaliere ad avere sperimentato la cura: il Centro Medico Universitario Hamburg-Eppendorf di Amburgo; l’ Ospedale Great Hormond Street di Londra e il Nationwide Children’s Hospital della Ohio State University a Columbus (USA). Per quanto riguarda l’Ospedale Romano lo studio avrebbe riguardato sei bambini ai quali sarebbe stato infuso il nuovo farmaco contenente il principio attivo direttamente a livello cerebrale. Al nuovo farmaco sarebbe stato dato il nome di “Cerliponase Alfa”. La nuova medicina sarebbe in grado di sostituire (come precedentemente spiegato) l’enzima carente nelle persone affette dalla malattia CLN2. Il test del farmaco avrebbe avuto un ottimo risultato considerando il fatto che l’87 per cento dei pazienti sottoposti al test non avrebbe subito il declino del linguaggio ed il declino del movimento insito nell’ evoluzione naturale della patologia. E stato dimostrato che il “Cerliponase Alfa” sia in grado di fermare la malattia senza però purtroppo ristabilire le condizioni neurologiche nei bambini affetti da tale patologia (sottolinea Nicola Specchio responsabile del reparto Epilessie rare del Bambin Gesù) raccomandando pertanto una diagnosi precoce in modo tale da garantire ai piccoli pazienti una qualità ottimale di vita. La nuova terapia avrebbe ottenuto una pronta approvazione dall’ americana FDA e dall’Europea EMA. Oggi anche altri bimbi starebbero beneficiando dell’efficacia della nuova cura ed attualmente all’ Ospedale romano Bambin Gesù vengono curati 12 piccoli pazienti fra cui una bambina che non avrebbe ancora sviluppato i sintomi della malattia, alla quale però i medici starebbero testando gli effetti del nuovo farmaco con l’intento che i sintomi della malattia neppure si presentino in futuro. Una grande conquista per la lotta contro questa patologia rara che abbiamo avuto modo di conoscere soprattutto seguendo il caso Alfie Evans (affetto da una patologia della stessa famiglia), malattia che speriamo ardentemente possa venire curata. Quello che dovrebbe portare ad una riflessione è il fatto che “staccare la spina” ad un malato sia a mia opinione un fatto davvero deplorevole ed una resa che denota una perdita netta dell’importanza della vita umana e dell’importanza della speranza che dovrebbe essere come dice un vecchio adagio l’ultima a morire.
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