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Sabin, our hero

The story of Sabina

Hi everyone.

I’m sabin, I’m 4 and a half years old and I live in Italy. I struggle to live from the first day of life. I really want to live and be close to mommy and daddy who love me so much.

I suffer from a rare disease called polymicrogyria, microcephaly, spastic dystonic tetraparesis, drug resistant epilepsy, dystonias and 6 months ago I discovered that all this is due to the de novo mutation of the SCN2A gene. I take 4 antiepileptics and 4 muscle relaxants. Lately, the epileptic seizures are quite under control, but I have many dystonias and dystonic fits, and for this we try to find a cure at the Bambino Gesù hospital.

I don’t walk, speek, see, eat but my mommy know anything of me. 

I love to be pampered and to stay in center of attention. My whole world is my mommy.

My motto is: life always smiles, despite everything.

If you want follow me search : Sabin, il nostro guerriero. On Facebook or Instagram A big kiss to everyone.