Xenia Berwald

First post: Apr 5, 2022 Latest post: Aug 2, 2023
Xenia’s story started back when she was an infant who was admitted to the hospital repeatedly for persistent failure to thrive despite adequate oral intake. She was a puzzle to everyone when all of the typical interventions failed to yield significant lasting results. Admittedly I resisted suggestions to start a caring bridge for her because I kept telling myself this was just a short term thing and on some level, having one made it seem like admitting she wasn’t healthy. The last three years have held 15 hospitalizations (I think… I’m actually losing track with some of the quick shunt revisions) 8 neurosurgeries, a few airway/ENT procedures, and countless other procedures and tests and the last week has reminded us that we never can know what to expect with this little fighter. She was recently hospitalized for pneumonia after a trip to the ER for respiratory distress, a high fever, and new myoclonus. When we were admitted we thought it would be a quick stay, but she hasn’t been rallying like she “should” and has started to exhibit additional symptoms that make it seem like there is something going on beyond her acute infection. She is currently on day five of high flow oxygen and an extended EEG while a team of specialists including her neurosurgeon, a neurologist, pulmonologist, and a few others try and sort out what is making her so sick. Throughout her story, our circle of support and people we call family has grown and I’m realizing it’s about time I make following along a bit easier on everyone! One of these days I will write up a more detailed history for those joining in, but for now, we are glad you are here- sometimes these days feel very overwhelming but so many people have loved us well and reminded us we aren’t alone through any of it. 

For those who are new to the story, the following links are stories about our courageous kid written by people more eloquent than me and will help fill in the gaps! 


***Quick note because we have had some questions/confusion! Tribute donations on CaringBridge go directly to CaringBridge and help fund their platform(which is a wonderful thing!) If you are wanting to contribute to Xenia’s personal fundraiser, there is a link to our gofundme that can be found under the “ways to help” tab!***

CaringBridge is a nonprofit social network dedicated to helping family and friends communicate with and support loved ones during a health journey. Learn more about CaringBridge.

To interact with Xenia’s website, sign in or register today.

By registering with CaringBridge, you will join over 300,000 people a day who are supporting friends and family members.

Sign In Or Register