Help Emily Fight PANS: Funding Hope for a Brave 8-Year-Old

Emily is an incredible little girl who has been fighting PANS for over 4 years. PANS, or Pediatric Acute Onset Neuropsychiatric Syndrome, is a complex medical condition characterized by the sudden onset of severe psychiatric symptoms in children following an infection, such as strep throat or other illnesses. These symptoms can include obsessive-compulsive disorder (OCD), anxiety, insomnia, mood swings, and behavioral regression. PANS is believed to involve an abnormal immune response that affects the brain, leading to the development of neuropsychiatric symptoms. Treatment typically involves a combination of antibiotics, immunomodulatory therapies, and supportive interventions to manage symptoms and restore normal function.

Since receiving an official diagnosis in 2023, Emily and her parents, April and Justin, have been tirelessly seeking a treatment that would help Emily's symptoms. As you can imagine, this is a strenuous task, both mentally and financially. If you feel lead to support the Beck family please join us! Every little bit counts!

What will your donation go towards? The form of treatment that has been recommended for Emily costs over $9,000 per infusion and is typically not covered by insurance - The treatment is called IVIG (Intravenous Immunoglobulin therapy and is an immunotherapy treatment that is considered the “gold standard” for treating PANS). Emily will most likely need 3 of these infusions. In addition to these infusions, appointments to see specialists that can assist in Emily's medical treatment typically cost between $200-$500.

We're reaching out to our community for support in funding Emily's IVIG therapy. Every donation, no matter the size, brings us closer to giving Emily the chance at a better quality of life. Your generosity will directly impact Emily's journey towards healing and bring hope to her family in this difficult time.

Here is a note from April and Justin regarding their story and their hopes for finding a successful treatment avenue for Emily:

"Our 8-year-old daughter Emily was diagnosed with PANS (pediatric acute onset neuropsychiatric syndrome) in Jan 2023; however, we have been battling this beast of a disorder since the summer of 2021. PANS has been devastating for Emily and our entire family. It is characterized by an abrupt onset of severe psychiatric symptoms after an illness (such as flu, COVID-19, strep, or other illnesses). For Emily, this includes OCD, severe anxiety and panic attacks, insomnia, rage and meltdowns. Receiving this diagnosis was both heartbreaking and enlightening. We finally had an answer to these bizarre symptoms and fluctuations in behavior, but we realized quickly there was no clear path to treatment. After searching online, we quickly discovered that finding a doctor that understood and treated PANS was going to be difficult. What we found was that most doctors that could treat Emily do not accept insurance and several were out of state as well. The appointments with these specialists have ranged in price from $200- $500, not including the treatments they recommend. We have spent at least an additional $10,000 on various treatments including IV infusions of antibiotics, steroids, and 2 rounds of SOT (supportive oligonucleotide therapy).

Typically, a first line of defense for treating PANS is a combination of antibiotics and antivirals. If that doesn’t work well enough, then you add in steroids. For a while this was an effective plan of care for Emily. She would start a combination of these treatments and we would have improvement for weeks and occasionally a month or so. Unfortunately, in the past 10-12 months, we are having fewer and fewer moments of remission, and the treatments are becoming less effective. It has been recommended to us to try IVIG therapy for Emily. IVIG stands for Intravenous Immunoglobulin therapy and is an immunotherapy treatment that is considered the “gold standard” for treating PANS. Although this is considered the best treatment for “treatment resistant” PANS (like Emily’s), IVIG is not currently FDA approved to treat it. This means it is incredibly difficult to get insurance to cover it. This treatment is $9,000 per infusion, and it is likely Emily will need at least 3 of these treatments, possibly more. We are doing everything we can to research, seek options, and find pathways for this to be covered by insurance, but have not succeeded yet." - April and Justin

Thank you for considering supporting Emily in her fight against PANS. Together, we can make a difference in her life and help her reclaim her childhood.