Fragile but Fierce

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.

In the spirit of a famous very bad day, some vacations are like that

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…

Columns

The Difficult Decision in Favor of a Feeding Tube, Part 1

First in a two-part series. Our son Jonah, who was born with junctional epidermolysis bullosa in 2009, struggled to eat from the beginning. It was one of the main reasons he had to remain in the NICU after he was born. Jonah finally ate…

Columns

Interview With the Butterfly, Part 2

Last in a series. Read part one. I continued an interview this week with my son Jonah, who is 11 and was born with junctional epidermolysis bullosa (EB), after we both got a bit long-winded the last time we sat down to chat.

Columns

Interview With the Butterfly, Part 1

First in a series. 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 column about EB, but Jonah is the one we need to hear from. Being his mom is the greatest…

Columns

Focusing on the Manna for Today

Our son Jonah is 11 years old now and just began the sixth grade. It blows my mind to think that it has been 11 years since our journey with epidermolysis bullosa began. In some ways, it feels like it’s been much longer, and…

Columns

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…

Columns

Choosing Between Bad and Worse, I Learned to Become an Advocate

The scariest thing about a rare disease is that nobody has the answers you’re desperately seeking. When you are facing something so unfamiliar and the people who are supposed to know don’t, it’s terrifying. The first couple months of the life of my son…

Columns

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…