Fragile but Fierce – a Column by Patrice Williams

Patrice is mother to two boys: 8-year-old Gideon and 11-year-old Jonah, who was diagnosed at birth, in 2009, with junctional epidermolysis bullosa. She is married to her sort-of high school sweetheart, Matt. They live in North Carolina with their two smelly dogs. Patrice loves reading, spending time with family, and being outside. Her greatest talents are taking naps and eating tacos. She hopes this column will give hope to those living with epidermolysis bullosa and light to those who love them.
August 20, 2020 Columns by Patrice Williams

If You Are Struggling, Find Your Army

When my son Jonah was born with epidermolysis bullosa, saying it was a shock is a gross understatement. Unknowingly, my husband, Matt, and I each carried mutated genes that, when joined together, made for a monster disease that ravaged our sweet baby’s tender body.  Our first…

July 23, 2020 Columns by Patrice Williams

My Butterfly Baby

In most cases I don’t agree that “ignorance is bliss.” In general, the more information we have, the better people we are and the wiser our choices. But there are certainly some things I wish I didn’t have firsthand knowledge of. I wish I didn’t know how McDonald’s…

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