Eva is a wonderful 11 year old. She enjoys art, volunteering at church, playing with her friends, music, and all animals big and small. Those who know her will say she is a fighter and tries harder than anyone you have ever met- she doesn’t give up.
For the past 5-6 years Eva has been struggling with a rare autoimmune disorder called Pediatric Acute-Onset Neuropsychiatric Syndrome.(Or PANS for short)
When Eva is exposed to bacteria, viruses or germs her immune system goes awry, producing antibodies that attack not only the invading germs but healthy receptors and other targets in the brain. This misguided reaction results in inflammation in Eva’s brain, triggering an abrupt onset of awful symptoms.
Due to her brain inflammation, Eva experiences extreme pain in her legs and joints. Sometimes she wakes up and screams in pain for hours. The brain inflammation also gives her extreme food aversions which could turn into an eating disorder. Her body has already stopped absorbing some nutrients through food or supplements.
This horrible disorder has also caused Eva to develop challenging OCD symptoms and she worries about germs constantly. She struggles with obsessions, compulsions, tics, panic and anxiety attacks, fits of rage and terror. Developmental regression, sensory abnormalities, vision problems and irrational fears. She experiences intense mood swings and feels it’s her alone against the world.
PANS has also affected her lungs and she has developed breathing issues and asthma she never had before. Sometimes she is wheezing too hard to participate in activities or even make her bed. Her body has developed 15 new allergies she never had before. Her immune system is not functioning properly. To simplify a very complicated disorder- her immune system is so overloaded it is rejecting what it needs and causing negative reactions at any time. We never know what to expect.
We have tried everything to treat her. Special diets, steroids, acupuncture, adhd medication, therapy, chiropractics, GI Dr, psychological eval, psychiatry, holistic Doctor, various inhalers, prescription anti-inflammatory, allergy shots, daily allergy medicine, supplements, and daily antibiotics she has been taking for years- but her condition has not improved. In fact, it recently has worsened considerably.
Eva has had to endure going to so many doctors and specialists just trying to find out what is going on. It took a few years but with research and our current pediatrician we have been able to make sense of this very serious and difficult condition and find her actual diagnosis. No child should have to suffer and it is heartbreaking to go through with her.
Now, we are running out of time. Eva needs IVIG Treatment and only has until she turns 12 for it to be most effective. This treatment will provide her with healthy donor antibodies. If the first treatment is given soon Eva has an 80% chance of healing!
This miracle treatment is only covered by insurance in 2 states for Eva’s condition and ours is not one of them. The cost of this treatment is out of our Family’s means and she could need several cycles of it. Cost per treatment ranges between $10,000-$15,000.
Please help our little girl anyway you can. Our faith is strong that Eva will get this much needed treatment. Donations and prayers are much appreciated.
Please share to spread awareness of PANS so that together we may strive to get insurance coverage for treatment for the children suffering with this autoimmune disorder in ALL States.
Thank you so much. Your help means the World to our child.