Interview With the Butterfly, Part 1

My son Jonah was born with junctional epidermolysis bullosa in 2009. He is now 11 and in the sixth grade. I am honored to write this columnabout EB, but Jonah is the one we need to hear from.

Being his mom is the greatest honor of my life. I wanted him to have a chance to share his heart in today’s column — and in the next one, too, because apparently he is long-winded. (What can I say? The apple doesn’t fall far.)