In crystal skin

18 minutes

Maria’s skin tears open every day but, though her body is fragile, her will is formidable

Eleven-year-old Maria Alejandra is a force to be reckoned with. Strong-willed, articulate and wise beyond her years, she knows what she wants, and sometimes that’s to stay home from school. Because she suffers from epidermolysis bullosa, a rare disease that causes her fragile skin to blister and tear, it’s easy to sympathise when even the most mundane tasks are a painful struggle. It’s also easy to sympathise with her mother who worries that, if Maria doesn’t continue doing everyday things with her peers, she could end up always indoors and isolated. 

Deeply honest and compassionate, In Crystal Skin is imbued with the hope and hardship that characterise the daily routines of Maria and her family. This short version is part of a larger feature film that chronicles the lives of Maria and three other people in Colombia’s capital Bogotá who are living with epidermolysis bullosa, a disease for which there is currently no treatment or cure.

Director: Michaela O'Brien

Producer: Melissa Langer

Website: In Crystal Skin

Get Aeon straight
to your inbox
Join our newsletter Sign up
Follow us on
Facebook
Like
Essay/
Gender & Sexuality
Transitioning

Individual transgender lives track a wider cultural history of surgery, hormones and revolutionised gender identities

Randi Hutter Epstein

Essay/
Old Age & Death
Die like a dog

Pet dogs often have a peaceful death that forestalls protracted suffering and pain. Why can’t we do the same for humans?

Joseph Pierre