The Lightning Strikes Twice: Meeting Giulietta

At the same meeting with geneticists where Benji’s diagnosis was revealed and we were still in shock, geneticists suggested we screen future pregnancies to avoid risk of another affected child. In that moment I was defiant. I interpreted the suggestion as a judgement about the value of my Benji. In misguided anger and wishful thinking, I refused genetic testing for my next pregnancy. I rationalized that this was a very rare disorder. A repeat of this syndrome was highly unlikely.

And Then Came You

Giulietta was born on March 8, 2007, by which time we had moved back to Toronto. I saw similar warning signs in infancy. By six months, it was clear Giulietta had significant developmental delays. I now had two very young children with the same rare genetic disorder that virtually no one understood.