Fragile but Fierce — Patrice Williams

Jonah, my 11-year-old son who has epidermolysis bullosa (EB), is wounded from head to toe and must be covered in lifesaving bandages every single day. These bandages not only cover his current wounds, prevent infection, and promote…

In another bummer turn of events, my 11-year-old son Jonah woke up on Sunday morning with a corneal abrasion. These, and the types of blisters he experienced on Christmas, are two of the most painful things…

Our Christmas started out like most people’s. Well, sort of. We, like many, kept it small this year. On Christmas Eve, we did bath and bandage change in the afternoon. It never really feels like a holiday…

I am an extrovert by nature. Most of my life I have gotten my energy from being around other people. I value others’ opinions, points of view, camaraderie, and comfort. I love to laugh and have…

Oprah recently released her Favorite Things 2020 list, and it got me thinking of my own favorites list. What are some of the things that have made our lives a bit easier…

My mom got an adorable kitten last weekend. When I showed my boys the sweet picture she texted us, Jonah questioned me about our cat that we re-homed when he was little. (Photos courtesy…

Last in a series. Read part one. After our son Jonah was born with junctional epidermolysis bullosa, we made the difficult decision for him to get a gastrostomy feeding tube. Once it was…

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…

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…

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…

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.

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…