Sophie was sitting on my lap when he told us she had Hutchinson-Gilford progeria syndrome.
Neither Daniel nor I had ever heard the name.
The doctor explained that it was an extremely rare genetic condition associated with accelerated aging and serious health complications. Then he told us there was no cure for the condition itself and that many children with progeria did not live into adulthood.
I looked down at Sophie.
She was smiling at me and playing with the buttons on my blouse.
I remember asking, “How can you tell me my daughter might not grow up when she is sitting right here smiling at me?”
Daniel said almost nothing during the appointment.
That night, I found him sitting beside Sophie’s crib in the dark.
After a long silence, he whispered, “I don’t think I can do this.”
I thought he meant the fear.
Then he looked at me and said, “I spent eleven years imagining her growing up. Now every time I look at her, all I can think about is losing her.”
