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…
Fragile but Fierce — Patrice Williams
Patrice Williams is mother to two boys: Jonah, who was born in 2009 with junctional epidermolysis bullosa, and Gideon. She is married to her sort-of high school sweetheart, Matt. They live in Winston-Salem, North Carolina with their two smelly dogs. Patrice works in communications for a nonprofit child welfare organization. She 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.
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Have you ever read “Alexander and the Terrible, Horrible, No Good, Very Bad Day“? Here’s a short excerpt: “I went to sleep with gum in my mouth and now there’s gum in my hair and when I got out of bed this morning I tripped on the skateboard…
