Three weeks later she died, without gaining consciousness.
It took almost six month before we got an " as close as we get" diagnosis. At that time we were told she had Hemophagocytic Lympho-Histiocytosis (HLH)syndrome, or the familial lymphohistiocytosis (FHL) syndrome. They could not tell which syndrome.
When Verona died we became active in a support group, for parents who have lost a child, Landsforeningen til stoette ved spaedsbarns doed.
At a meeting we met an MD, who told us that the silvery hair might be an indicator for an immune defect. He had at that time a little girl in his ward, struggling for her life. She also had silvery hair. So when Rebecca was born, we knew it might be the same. So it was us who made the MDs aware of the connection between the hair and the syndrome.