Zuzia is a little girl with a rare genetic disease, one that makes her skin fragile like a butterfly’s wings. The simplest touch can make her skin blister and fall apart, and because of this, she lives in constant, excruciating pain. After a fundraiser for the $1.5 million needed for her treatment received worldwide support, she and her family move from their native Poland to the US for a long course of procedures that might save her, or kill her. Jaroslaw Szmidt’s The Butterfly’s Dream captures the journey Zuzia and her family undertake in order to try to save her life.
Filmed over the course of several years, what seems at first a typical dramatic medical film, turns out to be an incredibly powerful tale of the fragility and resilience of a tiny human, facing an enormous challenge with acceptance and might. Her story goes way beyond its premise and into the depth of the human spirit, breaking your heart to pieces and putting it back together again – leaving you raw, shaken, and touched.
At birth, Zuzia was handed a challenge no one should have to face. Her disease makes her skin blister easily and painfully, from as much as a simple shuffle. Her condition affects her insights too, and it lowers her life expectancy dramatically. More than that, it takes away her childhood and turns her life into a living hell. But the pain she lives with every day, the debilitating power of her condition, and the daily procedures of changing bandages and feeding through a tube are part of how she learned to know life. Her parents are strong guardians and caretakers, having learned to deal with all her needs, struggling to keep up hope.
Her story goes way beyond its premise and into the depth of the human spirit…
Throughout the film, Szmidt’s cinematography feels almost as composed as in a fiction film. So many of Zuzia’s moments are hard to watch, it is unimaginable what it’s like to be her and to witness her day in and day out, in real life. Her pain penetrates viscerally through the screen, and watching her and her family is so intimate, it feels like being present and …
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