Saving Emma Grace
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."
As we approached the holidays I personally struggled. It was a reminder of how long we had been on this journey and how different Emma was from last year. Last Christmas was the last time we were normal. I saw photos from last Christmas and envied that family. I so badly missed those days when we could experience true joy. I had mixed feelings about these holidays. I feared how Emma would handle everything, but was praying that she would be able to find some happiness.
We had family staying with us at Thanksgiving and Emma did well. Until she didn't. After break was over the amount of school work increased and it became overwhelming for all of us. Emma was still struggling with depression and isolation and her OCD and sensory issues.
But as we headed into December, we finally began to see some real improvement! All of Emma's IVIG treatments began to pay off. We started seeing a marked improvement in all of her symptoms. We began to see longer glimpses of our Emma. We started seeing real smiles and hearing real laughter!
And then on December 9th, we decided ignored all common sense and rationality and brought home a 9 week old Golden Retriever puppy. We all instantly fell in love. Especially Emma. And we never anticipated the impact she would have on Emma. Emma's mood and ability to cope instantly changes in Miley's presence. Emma's Homebound teacher was so impressed that she is working with the school administration on a plan to eventually let Miley go to school with Emma as a companion or service dog! Miley is now 12 weeks and already she has learned come, sit, down, stay, off, leave it, and release. Miley won't be able to be trained as an anxiety/PTSD service dog until she is about 6 months, but already she shows great promise. Emma also wants to get Miley certified as a Good Citizen dog so we can bring her to Children's Memorial Hermann Hospital to visit sick kids! I love her heart for other hospitalized kids!
Our end to 2018 was bittersweet. Despite all the pain and heartache, we miraculously started 2019 with happiness and hope. Prayers have been answered and we can see how God has been faithful to us even when we couldn't feel His presence.
Emma has a long way to go in her recovery, but we are confident that things are only going to get better. We pray that with her continuing IVIG treatments, she will improve even more. We are also hoping that with counseling, she can learn skills to cope with her lingering symptoms.
First, we are so excited to share that the external reviewer overturned Aetna’s denial of IVIG! We prepared ourselves to lose the review so it came as a complete shock. It took some time for us to sort through what it all means in terms of past treatments and what exactly Aetna has to approve going forward. We still don’t have all the answers, but we do know that Aetna has been forced to cover IVIG for the next 24 months! Emma has infusions scheduled every 2 weeks through January and, depending on her progress, she may be able to switch to monthly starting in February or March.
We are so relieved that the external reviewer agreed that IVIG is not experimental, but unfortunately, Aetna has also denied coverage of two of her hospital stays and her Rituximab infusion. Rituximab destroys the cells that produce the autoimmune antibodies. Aetna, not surprisingly, considers it “experimental” for autoimmune encephalitis and we may be facing another round of appeals.
Second, Emma had another infusion this week and is slowly showing improvement. She has an incredibly long way to go, but she now has a steady course of treatment on her road to recovery!
Finally, the school district approved Emma’s placement in the Homebound program. She has had three sessions with her Homebound teacher and it seems a very good fit. Because it is a streamlined curriculum, Emma is already close to being caught up for the 30+ days she missed prior to Homebound. Even though she has had a lot of work to do, she has been able to work at her own pace without the overwhelming stimulus and stress of the classroom.
One of the reasons this GoFundMe was started was to help Emma get IVIG treatment while we fought with Aetna or to fund all treatments in the event of a final denial. Now that Aetna has been compelled to cover her IVIG, we are able to focus our attention on her other medical needs and expenses. Funds will be used for expenses such as Rituximab treatment (not covered), other outstanding medical bills and deductibles, and behavioral therapy and counseling for Emma and our family (most of which is not covered by insurance) to help her cope with and hopefully recover from the psychological and behavioral effects (such as anxiety, OCD and sensory processing). Any surplus funds remaining will be donated to a charitable organization dedicated to awareness and advancement of Emma’s condition.
We are so incredibly grateful for your continued prayers and support!
We are so blessed to be getting her IVIG, but it is still a really rough day for her. Because of her sensory issues, she has a hard time being connected to the IV pump and being confined in one room. She feels "trapped" and sometimes no amount of distraction can calm her down. Basically she has to scream and cry it out until she tires herself out. We are hoping that as she gets more treatment her sensory issues will abate and this will get easier.
Thank you again for all the love, prayers and support!
Usually we find that somewhere around 10 days post-infusion, Emma's symptoms begin to improve. And sure enough over the course of this week, we have seen a slow but gradual improvement! Her OCD, anxiety, oppositional behavior and mood have all improved. She has even been able to begin doing some homeschooling! On Thursday she got in the pool again for a bit and yesterday she was able to go to a friend's house to play for the entire afternoon! We have a very very long way to go, but for the first time in months we have hope that Emma will one day be free of Autoimmune Encephalitis!
Thanks to all of you, we are confirmed for Monday's IVIG infusion and we are so excited to see what kind of improvement will follow. Because of Aetna, she has never had IVIG on the bi-monthly schedule that her team of doctors recommend for her. So this will be the first time that her course of treatment isn't being interrupted! We have another one scheduled for November 6th and we are praying that before that our external review will be decided in our favor and Aetna will be forced to cover the rest of her treatment. We are still discussing what we will do if the external review does not go our way, but we do know this, we absolutely cannot let Emma's course of treatment be interrupted again! So please pray that our external review is successful!