I talked on the phone with another NGLY1 mom! That brings the count up to two wonderful NGLY1 moms I've gotten to speak with. Two fantastic families with beautiful kids fighting the same fight as Bertrand.
The NGLY1 community is growing, and it will be strong!
Back in September, I was crushed when for some unknown reason we would not be put in touch with the first NGLY1 family that was identified after ours. It was like catching a glimpse of a life preserver while drowning, and watching it float away.
I am eternally grateful to the families and researchers who have reached out to us.
We won't let you down.