Segawa's Dystonia: The Baby Who Changed Colours
Synopsis
Isabel's skin turns grey shortly after birth, prompting her parents to seek urgent medical attention for her alarming condition.
Synopsis
Retta Beery holds her newborn twins, Noah and Alexis, in the hospital on December 16, 1996. The family’s joy quickly fades as the twins cry incessantly and struggle to keep food down. Meanwhile, Isabel Comot's health deteriorates after birth, prompting her parents, Jake and Brenda, to worry when her skin turns grey. The documentary follows these families as they confront medical mysteries and seek answers for their children's unusual symptoms, including the rare genetic condition PXE affecting Charlie Harper.
Deep Dive
Why Watch
- Meet the Beery twins struggling with colic.
- Follow Charlie Harper's battle with PXE.
- See how families cope with medical mysteries.
Did You Know
- Isabel was moved to the intensive care unit within her first week of life.
- Only one in a hundred thousand people worldwide are reported to have PXE.
- The Beery twins cried non-stop for weeks before being diagnosed with colic.
- Charlie Harper's vision problems are linked to a genetic condition he shares with his sister.
Perfect For
Frequently Asked Questions
What condition were the Beery twins diagnosed with?
The Beery twins were diagnosed with colic, a condition where a healthy baby cries for extended periods without any discernible reason.
What is the prevalence of PXE (Pseudoxanthoma Elasticum)?
PXE is a rare genetic condition that affects one in a hundred thousand people worldwide.
How often do Charlie and his family undergo testing for PXE?
Charlie undergoes regular testing to monitor and treat retinal bleeding associated with PXE.
What are people saying?
Play More Like This
Where else to watch
Browse more like this
Related Films
Is this your film?
If you made this film or hold the rights to it, we'd like to talk. We can license it and pay you a share of what it earns.

























Comments