This is Emma Grace Straub. She is 9 years old. She is very ill. She has inflammation of her brain after a month long febrile illness in January 2018. Emma is my cousin's daughter.
Before her illness, Emma was a happy and active. She loved school and was a gifted swimmer who swam competitively on two swim teams and regularly spoke of her aspirations to be an Olympic swimmer. She enjoyed healthy friendships and her family. She attended church, sleepovers, multiple swim practices every week, and extracurricular school events.
Emma spent January 2018 with febrile illness, with her temperature regularly rising above 104° and she always tested negative for the flu and strep. When the fever left, it took Emma with it.
Immediately after her illness Emma's personality and behavior changed. She was suddenly having toddler-like temper tantrums over minor things. She suddenly struggled with OCD, sensory issues, anxiety and behavioral regression. Over the next few months, her symptoms worsened and she became increasingly abusive and violent. Her parents feared for her safety and those around her. She became very negative about herself (she is very aware that she is different and hates that she cannot control her thoughts and behaviors). Emma developed suicidal tendencies.
Emma was seen by pediatric neurologist and was diagnosed with autoimmune encephalopathy. She was treated with high dose antivirals, antibiotics and steroids (that caused weight gain and moon face). Emma’s condition continued to worsen, however, and the behaviors intensified even more. She was unable to cope with noise and crowds. Her negative thoughts became overwhelming. Emma was no longer able to attend school and she quit her swim team.
By the end of May, Emma had reached a point of being a danger to herself and to others and she was admitted to the hospital. IV steroids did not improve her condition. During her hospitalization she was given 2 doses of IVIG (intravenous immunoglobulin) in the hopes that it would disable the autoimmune antibodies attacking her brain. Finally after months of declining, she began to improve! Her parents took her to Mayo Clinic where they agreed that IVIG was the best treatment for Emma. Emma received another round of IVIG in July and improved even more! Emma, her parents and doctors began planning her infusion schedule which would be carried out over the course of the 12 months.
When Emma's doctor sought pre-approval for her IVIG treatments, AETNA denied coverage claiming it was "experimental". Emma's doctors tried to reason with Aetna, but they still refused to pay claiming that IVIG is "experimental" for kids like Emma. In reality, however, Aetna doesn't want to pay for it because it is expensive. Over the next 12 months, Emma will need 15 infusions which will cost Aetna over $200,000.
Her parents were forced to submit lengthy appeals explaining why IVIG is not experimental . Still Aetna refuses. Her parents are currently preparing the third and final appeal, but do not hold out much hope for a different decision.
Without IVIG, Emma's immune system goes unchecked and continues producing the antibodies that attack her brain. So her brain remains inflamed and Emma continues to suffer from the resulting psychiatric symptoms. She suffers with OCD, sensory issues, anxiety and intrusive thoughts that she cannot cope with. She does things she does not want to do. Things that are harmful to herself and others. Often she does not even remember doing those things. She is miserable. This child is exhausted as is her family that must always be vigilant about protecting themselves and her.
She needs the IVIG! We as members of the human race cannot let something untoward happen to this precious child- WE NEED TO SAVE EMMA! Medical bills are mounting for Jenee and Matt, her parents. They have chosen to continue IVIG at any cost. Hopefully the pharmaceutical
companies and insurance companies will come to their aide.
But in the meantime, whatever ANYONE can do to help financially would be much appreciated. If the insurance company or Matt's employer comes through, any funds not needed for Emma's medical care will be donated to a non-profit organization to help other children with neuroimmune disorders.
Please pray for Emma and her family.
"For Whatsover you do to the least of my brothers, so you do unto Me."
- Kelsey Bock
- Carol and Mark Wilson
- Marie Straub
- Marie and Jim Straub
- Maria Rosner