Help Bronwyn Recover From PANDAS and CVID
Donation protected
For those of you who do not know me (or Carrie and Kevin), Carrie and I were roommates at the Evergreen State College, where we became instant best friends. Carrie continues to be one of the most important people in my life, and her support and love throughout my own difficult times has been cherished and invaluable. There has never been a time when she didn't gladly drop everything to try to help me when I needed it. She is the most caring person I know and has always done her best to do what she can for others in need.
Sadly, it is now her young daughter who needs help. Despite a rocky start due to being born at 29 weeks and just over three pounds, their daughter Bronwyn was a happy, giggly, sweet baby and toddler. But in the summer of 2016, she developed an opportunistic rash caused by strep. After treatment, the rash went away, but her behavior changed overnight. Gone was the gentle, eager-to-please toddler, and in her place was an anxious, angry, rageful child with obsessive thoughts, insomnia, phobias, a speech impediment, behavioral and emotional regressions, hallucinations, and night terrors. After much investigation, it was determined that Bronwyn had PANDAS or Autoimmune Encephalitis of the Basal Ganglia--an autoimmune disorder set in motion by that strep infection. She has also been diagnosed with Common Variable Immune Deficiency. It's three years later, and they've tried all of the less invasive treatments for her condition with only temporary success. The next (and, at this point, only approachable) treatment is IVIG-intravenous immunoglobulins. It is the preferred treatment for both of her conditions and is recommended by Bronwyn's team of doctors.
Despite many attempts over the last year and a half, insurance continues to deny coverage for this expensive treatment. Unfortunately, PANDAS is progressive. Time is flying, and she's getting worse. She has sustained neurological damage that impacts her cognitive abilities and her mental health. She has seizure-like episodes and bouts of what looks like psychosis. They can't wait any longer. The damage could become permanent, which is not a risk they can take.
This necessary treatment to save their daughter could bankrupt their little family. Each treatment will cost around $12,000, and they've been told to expect that she will need a minimum of three but probably more than six sessions. Every little bit helps! Carrie and Kevin are too humble to ask for help, but they are hardworking, caring, beautiful people, and Bronwyn is just an innocent little 8-year-old girl. She is currently locked in a world of misery. She can have little to no contact with the outside world because of her immunodeficiency and the nature of her autoimmune neurological condition, which is triggered by any strong hit to the immune system.
She is such a goofy, sweet, smart kid. She loves dogs and goats and wants to run an animal sanctuary when she grows up. She loves to do art. She loves listening to stories, learning about history, and ALL the animals. She deserves a childhood and a life.
Donations would be appreciated more than words can say! We are currently hoping for enough to help get IVIG started. But, even if you can't donate, it would be much wonderful if you could help spread the word and share this page.
If you'd like to learn more about this condition and why treatment is so absolutely necessary, take a look at the documentaries below.
Stolen Childhood: https://www.youtube.com/watch?v=Cprp-zhkDCM
20/20 PANDAS special: https://abc.com/shows/2020/episode-guide/2018-07/20-072018-pandas
My Kid Is Not Crazy: https://www.youtube.com/watch?v=WJQT9-cQwIw
Organizer and beneficiary
Gabriella De Sanctis
Organizer
Tucson, AZ
Carrie McGowan
Beneficiary