Maria Costanza

We are Jenny and Lorenzo. In the midst of the pandemic, in June 2020 Costanza was born. A month before that, we received the tremendous piece of news, it has been revealed a cerebral hemorrhage, and this made us sink into despair and into the deepest uncertainty but at the same time it gave us an unexpected vortex of love that kept us afloat.

An year later, in September, she was diagnosed with a rare disease, She has the COL4A1 and this piece of news upset the equilibrium that was already precarious…because “ok it happened”, “we’ve been unlucky”, but knowing that it can happen again and it can strike any organ is destabilizing… it scares us… a lot!

This is us: two parents that with some difficulties are trying to keep themselves united and to be happy despite everything, because between us there is a rare sun to love and to grow to the best of our abilities.

Now Costanza is 22 months old, COL4A1, epilepsy, right hemiparesis, big eyes, lots of smiles and a temper that we hope will be her strength.

She still doesn’t walk but we are working on that, she can say a few comprehensible words but she tells stories gesturing with her little hands. She loves rusks with jam, cheese, pizza and omelette with vegetables. During this period she plays doctor, she likes to pretend to cook and to colour her little hands with markers. She doesn’t like loud noises, talking dolls and to sleep on her bed alone, it’s better with mom and dad!

With the uncertainty in tomorrow we’re being strong trying to be happy for every little milestone, for every smile and hug that life brings us.

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