Gaia

Gaia

Today we tell you the story of Gaia.
It is a bizarre story, the story of time running backwards. Gaia was born in her native Sicily, volcanic, tenacious and luxuriant like her land, dark like the ashes of Mama Etna, fiery, dynamic, vital, like the magma you see coming out of the balconies of Catania.

Gaia is an attentive, perceptive, active child. One of those children who takes life head-on, with enthusiasm, as a protagonist, savouring every moment. Gaia is even precocious, evidently inside herself she perceives that she has no time to lose, that time is not her friend, and she must challenge it. So she begins to talk early, to walk early, burning the candle at the seams. So much joy in the house, so much serenity, everyone watching such a clear-headed and cheerful creature. Gaia turns six, new apron and backpack on her shoulders. The little letters, the first syllables, the numbers up to a hundred. Gaia no longer rushes through the stages, she slows down the race. Gaia struggles: too many stimuli, too much concentration required, she cannot stand still, she has to do, do, do several things at once, change constantly. The teacher notices. The process begins, the first evaluations, Mama Angela feels that more needs to be done. Gaia is hyperactive. But something doesn’t add up. Gaia goes from attack to defence, backwards. From a hundred to ten, from syllables to letters. She forgets what she has learnt, her head begins to empty at the age when it fills up.

“Mama” becomes “ma-gga”, even the simplest words, those of the heart, become difficult to pronounce. So much tension in the house, so much worry, everyone watching an ever-wonderful but struggling creature. Gaia goes to the polyclinic in Catania, too many questions await an answer. It is enough for the doctors to see her, the diagnosis arrives shortly afterwards. A blow to the heart, a stab, the frost in the boiling soul of two Sicilian parents. Gaia, the volcanic, precocious Gaia, suffers from Mucopolysaccharidosis 3. A metabolic, neurogedenerative disease, the Alzheimer’s of children. A diabolical disease, which first makes you believe that everything is normal and then offends you, betrays you, steals you like a thief all the progress you have made, until it extinguishes you. The diagnosis is a watershed, something is broken. One thing, however, remains, resistant, tenacious. Love for Gaia, that no one can steal. And the more the disease advances, the more it grows and becomes solid. Gaia is a Sanfilippo child, and a madly loved child.

Sostieni la ricerca

Al momento per i nostri piccoli non c’è una cura, ci sono solo dei piccoli espedienti per cercare giornalmente di convivere con i sintomi ma c’è una cosa importantissima su cui dobbiamo avere speranza: la ricerca.