Genetic testing: Baby's condition is so rare it has no name
Thea Hamill's condition is so rare that it has yet to be named.
As far as the family and doctors are aware, there are only 10 other cases in the world.
So it was little wonder that doctors were baffled when it came to a diagnosis.
That was until her mother Chloe, from Wrexham, happened upon a BBC Wales news story on social media, from August 2020, about a new genetic test for critically ill children in Wales.
"If I hadn't seen that report, we would never have known what was affecting Thea," she said.
