Can you imagine a world in which your body acts like a prison? Muscles turning to bone, leaving you incapable of movement. However, your mind as active and clear as anybody else’s. Can you imagine living that way? 7-year-old Luciana, the main subject in the documentary The Girl Whose Muscles are Turning to Bone, doesn’t have to imagine it, she’s living it.
I’ve recently taken an active interest in the human body and I’m currently taking anatomy lessons. In class, we’re learning about muscles and bones and this is probably why the title of this documentary on Netflix grabbed my attention.
Luciana suffers from FOP – Fibrodysplasia ossificans progressive which is an extremely rare connective tissue disease. The disease is caused by a mutation of the body’s repair mechanism, which causes fibrous tissue to be ossified spontaneously or when damaged¹.
Luciana needs a caregiver with her every moment of every day. Even when she’s in school she’s constantly trailed by a woman that apparently has been doing just that for 5 years. However, that is not what surprised me. What stood out to me most was that Luciana seems to be a normal 7-year-old who just happens to have a unique condition. Her mother tells her constantly that she’s special, she’s one in a million and that she is lucky to be unique.
Besides Luciana, we also meet 55-year-old Robert, one of the oldest surviving FOP sufferers in Britain. Both his legs are locked and so are his knees and his toes. He explains that “there is no mobility at all.” Robert takes life from day to day, explaining that the worst part is not being able to do anything for yourself. Robert is a prisoner in his own body.
We also get to know 28-year-old Adrian, who can still somewhat move with the help of a cane. Luciana’s mom asks Adrien’s family for advice. Adrien’s mother simply tells her that they “have always given him a free rein (…) You’ve got to let them have a normal life.” I can only imagine that for a healthy female, such as Luciana’s mom, a normal life doesn’t seem within reach for an FOP sufferer. She will always worry about Luciana being safe, because any bump or fall can speed up the process of Luciana’s disease and create new bone growth.
It’s the fine line between protecting them from harm but also respecting their privacy and freedom.
It breaks my heart to see this happy, clever young girl enjoy swimming with dolphins and running around with her friends, knowing that within a few years, she won’t be able to do any of that.
The big decisions in Luciana’s life include whether she wants to be frozen standing upright or sitting down, assuming her body will let her choose.