I love Facebook‘s Memories feature. Although it can be a negative space, I do value it as a digital scrapbook for our family. Each day I open the app and reflect on what has happened on that day in previous years. There are hilarious stories, like the time our…
Fragile but Fierce – a Column by Patrice Williams
I’m avoiding packing. I have a two-page packing list with three columns per page staring up at me from my kitchen counter. I feel the printed pages mocking me as I pace the floors trying to get started. We leave for the beach in 48 hours, and I’m frozen in…
Our son Jonah’s last day of sixth grade was last week. Like every kid, he brought home loads of papers, folders, and notebooks. And like every kid, he left the contents piled on the dining room table waiting for it to magically clean itself up. After three days,…
“Did a wolf attack your face?” That’s what the preteen asked my son Jonah, who was born with junctional epidermolysis bullosa, when Jonah approached their group to play whiffle ball. It was between his brother’s Carolina Wolfpack baseball games. Jonah was…
We have good days and bad days, and good weeks and bad weeks. Twelve years into our fight with epidermolysis bullosa, we’re pretty used to the ups and downs. But two weeks ago, we had one of our worst weeks ever. It started on Tuesday…
My son Jonah loves baseball. He watches almost every Atlanta Braves game on TV and looks at MLB highlights on YouTube every morning. He plays it on PlayStation 4, with a plastic bat and rubber ball in the backyard, and with a soft ball and bat…
Like with everything involving epidermolysis bullosa, finding the best bandage routine for our son Jonah, who was born with EB in 2009, has been a process of trial and error. The same process certainly doesn’t work for everyone, but I’d like to share what has worked for…
Like many teenage girls, when I was younger I imagined what my future would look like. I pictured a wedding with a loving husband, a house with a white picket fence, and at least two kids. These kids had 10 fingers and 10 toes. They…
Dear Jonah, When you were born with epidermolysis bullosa, they told us there was an 85% chance you wouldn’t make it to your first birthday. But this past Saturday you turned 12. Twelve years old. There is a part of me that can’t believe you’ve…
There are days when Jonah, my 11-year-old son with epidermolysis bullosa, and I feel like educating folks about his condition. And there are days when we don’t. When he was younger, I would intercept the stares, block him with my body, and do the educating…
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 healing, but also give him a layer of “skin” that keeps…
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 he endures. He hasn’t dealt with an eye…
Recent Posts
- Inmune gearing up for applications seeking approval of RDEB cell therapy
- Researching my EB diagnosis as a child had long-lasting impacts
- Study highlights challenges faced by caregivers of children with EB
- Making sure to remember how far we’ve come while living with EB
- Experimental stem cell therapy eases RDEB symptoms, families report