Urgent Help for Thalia's PANS Recovery

Hello, my name is John Mooradian. Thanks for taking the time to read my story and hear my appeal. My wife Danyelle and I are parents to three beautiful children, two biological and one adopted. Their names are Siroun (12), Thalia (10), and Aubrey (6), and they are everything in the world to us.

In January of this year, Thalia contracted a condition called PANS (Pediatric Acute-onset Neuropsychiatric Syndrome), that has had a devastating effect on her life and the life of our family. The syndrome is a type of autoimmune encephalopathy that causes the immune system to attack the brain, causing inflammation and triggering the disease. People with PANS and PANDAS may experience a variety of different physical and mental health symptoms such as OCD, severe anxiety, motor/vocal tics, depression/suicidal ideation, and degraded physical and mental capabilities. In Thalia's case, her symptoms have been so severe that she periodically loses her ability to speak and has had bouts of catatonia that cause her to become unable to move or respond.

We have recently begun a course of treatment called IVIG that shows promise for treating PANS, but it's a very invasive treatment that involves spending an entire afternoon in an infusion center hooked up to an IV. Treatments happen once or twice per month. If you or someone you know has ever been through chemotherapy, the process looks very similar.

While IVIG treatment in collaboration with cognitive behavioral therapy can be incredibly beneficial, it is also extremely expensive. Because of the changes we've needed to make to our schedules - Thalia needs constant supervision - we're losing our health insurance due to an employment contract not being renewed. Discontinuing treatment isn't really an option as it's looking like the best course of action to bring our child back from this terrible condition. We just want her to be able to go back to her normal life where she gets to do things with her friends, play soccer, ride her bike, etc.

Thalia's a really great kid. She's kind and funny, she loves AC/DC and the musical Hamilton, and she really wants to study geology when she gets older. We love and adore her more than words can say and we just want her to get the treatment she needs to get better. It's so hard to ask this in such a public way, but we're desperate for help, so please help us heal our child in any way you can.

If you want to know more about PANS/PANDAS, here are some links to organizations that provide a lot more detail about the condition.

https://www.nimh.nih.gov/health/publications/pandas

https://www.pandasppn.org/

https://pandasnetwork.org/

I also want to thank all of the doctors and nurses at Tufts Medical Center and at The Floating Hospital for Children's pediatric infusion center. If anything could be described as doing God's work, they're doing it.