We're raising funds for the medical care of Emma Rose Hollback, our 11 yr old daughter who is suffering from PANS (Pediatric Acute-onset Neuropsychiatric Syndrome). PANS involves rapid onset OCD symptoms, accompanied by severe anxiety and various tics due to brain inflammation from a misdirected response of the immune system. Root causes can be any number of viral or auto-immune illnesses. The treatment of this condition requires specialists outside most insurance networks, and is quite costly. Any donation will be greatly appreciated!
EMMA'S STORY: In early 2020, Emma began displaying symptoms of severe anxiety and OCD, including an intense fear of death and her heart stopping. She also developed facial tics. Overnight, our cheerful and sociable little girl became locked into her symptoms. For the next three months, Emma had to be near one of us at all times and required constant distraction in the form of TV. Bedtime was extremely difficult, taking hours for her to calm down and be able to fall asleep. She could not leave our home, play, or do school work. Our family doctor was at a loss, attributing her symptoms to mere anxiety or a response to stress. Eventually through our own research, we were introduced to PANS. The symptoms of the condition lined up perfectly with what Emma was experiencing, so we joined online support groups and read many stories from other parents with PANS afflicted children. These accounts were heartbreaking and we were relieved to finally be in contact with other families whose lives had also been turned upside down. As we were seeking treatment options, the COVID 19 pandemic enveloped the world. In-person doctor visits now became near impossible. We were able to have a virtual consultation with a PANS specialist out of St. Louis. He confirmed our belief that what Emma was dealing with was indeed PANS. We were able to develop a treatment protocol for Emma that reduced her symptoms in a major way. By late 2020, we were able to go on a family vacation and life returned to relative normalcy.
The past 4 years have seen ups and downs for Emma. She has attended school and excelled as a student. She is a talented artist and loves to draw and paint. But there is no known permanent cure for PANS and flares are frequent, particularity after a viral illness. Flares vary in severity. In early 2022, Emma had to be pulled from school because her symptoms had returned. This flare lasted for 2 months. In September of this year, she experienced another bad flare that is ongoing. PANS symptoms present in different ways, particularly the OCD aspect. In this current flare, Emma developed a fear of swallowing, believing that she will choke on any solid foods. This necessitated her being put on a liquid diet, resulting in weight loss and lack of energy. She is now eating some solids, but it's still a struggle for her. For a sociable little girl who loves her friends and school culture, depression has been a major factor for Emma. She struggles to have any optimism concerning her future and feels she will never get better. We have determined that more aggressive treatment is required, and have been pursuing options and solutions. Given our geographical location, such sustained treatment will require lots of travel and expense, which is why we are reaching out to friends, family, and neighbors for financial assistance. We are hoping that with the right intensive treatment, we can rescue our precious daughter from a seemingly endless cycle of flares and life disruption.
For more information about PANS, see the following links:
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