We wish nothing but healing wishes for Stori. Stori’s mom shared her story with us on the day of PANS PANDAS Awareness Action Week, when we shared many stories. This is the story that completely did me in. It was about 11:00 p.m., and I wanted to read all the ones that came in later that day to at least get them up on the website. I just cried and cried. I remember my kids at this age and how awful PANS was to them. I think about all the kids in our community and what this horrid disorder does to everyone. It breaks my heart and makes me so angry that so many doctors dismiss these kids and their families by saying it is all in their heads, this doesn’t exist, and all that. And then I wipe my tears, knowing that more and more doctors really are starting to understand that this is a treatable neuroimmune disorder, and we don’t have to consign people to a lifetime of struggle. There is hope. We must keep educating, talking, and advocating; just don’t stop. So please, join us. Keep sharing information. Share this story. Someone will read it. Maybe no one will respond right away. But someone will read it, and it will make a difference.
In hope and healing, Gabriella
Stori’s journey started when she was 4 years old. She was happy, outgoing, and so full of life but then everything completely changed! She developed selective mutism. She stopped eating; she was actually terrified to eat and terrified for those around her to eat. She was terrified to walk on the floors at home. She was always worried that something bad would happen or that someone would get sick and vomit.
Thankfully, we found an amazing doctor who told us about PANS and PANDAS. Stori began treatment about a year ago and we saw small changes almost immediately. She has continued to have flares from time to time but we’re grateful for how far she has come in her healing journey.