Support for Xenia and Berwald Family

New surgery, new baby!, new campaign!

Last year, Xenia was hospitalized six times to address persistent failure to thrive as well as other symptoms that a myriad of specialists struggled to find the cause of. Eventually, she had neurosurgery to help alleviate pressure from a brain malformation that was contributing to her poor growth, causing apnea spells, and triggering extensive(hours long) irritability spells due to the intense amount of pain she was frequently in.

That surgery was a success and her condition improved: she was growing, she had far less episodes of screaming due to apparent severe headaches, and she was able to lay on her back without discomfort. However, in the last few months, many of these symptoms have returned. She’s back to not being able to tolerate being on her back, her sleep quality is poor with frequent apnea and waking throughout the night. She often has episodes of trouble swallowing food without choking, gagging, or vomiting ; and most importantly, her growth has stalled again: after a severe decline in weight in December it has taken a lot of intervention just to hold her steady. Both her primary doctor and neurosurgeon agree some more work is needed.

This new surgery is, without going into great detail here, basically a more invasive version of what she had before. It will create more space for her cerebral spinal fluid to flow and hopefully manage her symptoms so that the vicious cycle of hospital stays, specialist visits, and sleepless nights can subside.

The surgery is scheduled for Feb 20th. The Berwalds are anticipating a hospital stay of about a week after the procedure. She also will be recovering for quite some time after being discharged as this surgery is much more invasive than the first.

This will be more unpaid medical leave for Joy. These unpaid days will be in addition to the unpaid time that Joy will be taking later this year when baby #3 is born.

Due to the tumultuous year that 2019 was, the Berwald family truly has not had time to recover. It seemed that bills piled up and money was tight even before Xenia was scheduled for more surgery. Your financial support will help ensure that they can focus on being fully present for Xenia’s recovery and be prepared to help both girls welcome the new little one this summer.