Help Brigid battle Brainstem Encephalitis

I am starting this campaign in support of my dear friend, Brigid, who was recently diagnosed with an extremely rare auto-immune disease called Bickerstaff Brainstem Encephalitis (BBE). BBE is an inflammatory disease of the central nervous system that has caused swelling in her brain.

 

Last December 20th (on her birthday), Brigid was having trouble with her balance and was suffering from bad headaches, so she was taken to the hospital. The doctors couldn’t figure out what was wrong at the time. On Christmas Eve, she was having stroke-like symptoms, and the next morning, on Christmas day, she tested positive for Covid, and was sent home for her safety. The doctors believe that was when the swelling in her brain began.

 

When her parents arrived in Colorado at the beginning of January, Brigid’s balance was still off, she started experiencing an increased sensitivity to light and sound as well as showing signs of short term memory loss.

 

After seeing a neurologist with continuing symptoms of dizziness, tingling and numbness in her arms with increased sensitivity to light and sound, the doctors recommended she go to the Mayo Clinic for more thorough testing. A week later she traveled to the Mayo Clinic in Minnesota. While at Mayo, she underwent extensive testing (Brain MRIs, Spinal Taps, electromyogram, brain-wave testing, both awake and asleep, and the list goes on). Although this testing resulted in her diagnosis, none of it is covered by her insurance.

 

The good news is that the doctors think that with the right treatment, within 8 months to a year, she could make an 85% to 90% recovery and her symptoms may go away. The trick is getting the right infusion treatment cocktail, and this is tricky because of her two other, ongoing auto-immune diseases: Crohn's & pyoderma gangrenosum. It is possible that the medication she was on for these conditions was part of the cause for her BBE.

 

For the past four months, her parents have had to step away from their businesses to be by her side to take care of her. Not only has the travel and loss of revenue been costly to both Brigid and her parents, but Brigid’s testing and treatment also has and will continue to cost a great deal of money. This is why I am starting this campaign: to try and take some of the financial burdens away so that Brigid’s parents, Karen and Bob, can concentrate on Brigid’s recovery & help pay for her medical and personal bills.

 

The Mayo clinic has made the infusion protocol and Brigid just began a difficult 12-weeks of infusions in Colorado. We do not know at this point if it will work -- but we are very hopeful!

 

Although she IS aware she has brain swelling and she isn't okay, every day requires a different approach to interacting with her. Among the most difficult things is that we cannot fully explain to Brigid what is happening in a way she can retain right now. So to keep her calm and not panicked, we are leaving all discussions about her battle to her parents and respectfully ask that you do the same.  If you check in with her, please do not talk about her BBE.

 

Those who know her know what a loving, independent, free spirit she is -- which adds to the cruelty of this diagnosis. So many of us are lucky enough to call Brig our best friend. She needs us now. Until she regains her short-term memory, she won’t be able to run her business or make any money to support herself. Please join us in helping her. Any amount makes a difference. If you cannot donate, please  share this with others and on social media.  We are using #TeamBrig

 

From the bottom of our hearts, thank you for your love and support.