To know Odette is to love her. She’s witty, funny and brave. Her life changed quickly in 2024 when she became very ill at the age of 3, and was diagnosed with Autoimmune Encephalitis (chronic swelling of the brain), and PANS (Pediatric Acute-onset Neuropsychiatric Syndrome), a complex medical condition characterized by the sudden onset of severe psychiatric symptoms in children following an infection. These symptoms can include obsessive-compulsive disorder (OCD), anxiety, hallucinations, insomnia, physical and behavioral regression, and more. PANS is believed to involve an abnormal immune response that affects the brain, leading to the development of these symptoms. Treatment typically involves a combination of medications, immunomodulatory therapies, and supportive interventions to manage symptoms while restoring normal brain and body function.

While it is available, treatment to heal from PANS is overwhelmingly not covered by insurance. Instead, insurance will only cover medications to control the symptoms, like OCD and tics. We want healing for Odette, not just symptom-management. We have sold everything we can and with the help of family we have paid for treatment for Odette for the last six months. We are already seeing progress, and believe that she will recover completely with continued treatment.

Odette’s Story:

In January 2024 our family (Drew, Hannelore and Odette Lewis) moved to South Carolina to live with Drew’s family, rent-free so that Drew could complete a job training certification in GIS. Our hope was to finally get back on our feet financially after Hannelore losing her job during covid and Drew battling severe Crohn’s Disease and Colitis. We were eagerly looking toward a more “normal” life.

Right after the move, our daughter Odette got sick and was put on multiple antibiotics, but rather than getting better, she suddenly started exhibiting odd behavior. Our normally happy and low-key girl started having odd outbursts, screaming at people, twitching and banging her head, crying, complaining of pain and scratching herself all over, having accidents all day long, and waking in the night with night terrors so disturbing that we were utterly baffled and very concerned. We took her to multiple pediatricians who were baffled, too. They told us she was probably upset from our cross-country move. That she was having seasonal allergies. That she was “just going through a stage”. Odette’s symptoms got worse each day until finally, in Nov 2024, a new Dr ran over 17 labs and we found out the truth: Odette had Encephalitis (swelling of the brain), fungal infections in her intestines, mold in her sinus cavity, high levels of arsenic and aluminum in her blood, and inflammation throughout her entire body. Her immune system was so taxed that her body had begun to attack itself.

Things Odette had been able to do before, like hold a crayon and color, go down a slide, or use the toilet when she needed to go, she could no longer do. The inflammation in her brain caused her to see things that weren’t there, to have horrible anxiety, OCD, and many other other life-altering symptoms. We were told that Odette had PANS: Pediatric Acute-onset Neuropsychiatric Syndrome, brought on by the infections she had undergone, and living in a house with hidden, toxic black mold.

Every day became a massive struggle for her, and we quickly realized that all other plans had to be put on hold. The reality was that the road ahead was going to be long — physically, emotionally, and financially. We sold everything we could, used the money meant for Drew’s school, and the help of our family to begin paying for treatment for Odette. We packed up what we had left and moved cross-country again, into a borrowed RV, parked by the side of a family member’s house. Insurance does not pay for treatment for PANS in most states. The only options our insurance would cover were behavioral medications for the tics and OCD Odette was dealing with. We opted to pay out of pocket for medications that would actually help Odette to heal by reducing the swelling in her brain and body, stabilizing her mast cells which are in MCAS, and beginning to remove the high levels of arsenic and mold present in her system. PANS is a illness that many haven’t heard of, and it is often misdiagnosed. Finding a specialist to treat Odette was no easy feat, and the treatment is not fast or simple. It requires slowly helping the body to return to normal and “realize” that it is not the enemy. Many parents of children with PANS undergo treatment for years, however, after only 6 months we are already seeing signs of healing in Odette! We believe that she will recover completely with continued care.

As I type this, Odette is about to celebrate her 5th birthday! She’s already been through a lot in her short life, but she continues to face each day with kindness and strength. Even when she wishes for health and gets tired of the hard journey. Thank you for your help as we trust God for our girl's recovery, and for our family to walk out of this wilderness and into the promised land. If you cannot donate, we understand, and would ask that you would add us to your prayer list.

We are asking for help with these things:

• Continued treatment for Odette for the next six months: 12k

• Dental care for Odette, due to tooth decay from prolonged inflammation: 4k

• Replacing the money for Drew’s job training, so he can finish his GIS certification and reenter the workforce: 5k

• Help to buy a used car so that we can get Odette out of the RV we are living in more often, and into nature: 5k