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The Little AE Warrior Whose Story of Valor Became Legendary

The Little AE Warrior Whose Story of Valor Became Legendary

April 15, 2018 | Devon Frakes Fults

Preamble ~

Female warriors in history who engaged in war are found throughout mythology and folklore.  A mythological figure does not always mean a fictional one, but rather, someone of whom stories have been told that have entered the cultural heritage of a people as mortal heroines.

Some women warriors are documented in the written record and as such form part of history.  However, to be considered a warrior, the woman in question must have belonged to some sort of recognized legion. In this case, the autoimmune encephalitis community. Today we document the story of Hadley.  A little warrior whose battle over insurmountable odds lead her to victory. Hadley’s story is not a legend. Hadley’s story is legendary. Therefore, we enter it into the cultural heritage of our people, the AE community, and mark Hadley into our history as a mortal present-day heroine.

Just over two years ago we woke up to what we thought was a normal Monday and found ourselves by days end standing in the Texas Children’s emergency room with our three year old daughter Hadley in a coma and near death.

I laid down next to my perfectly healthy daughter on Sunday evening and didn’t wake up to the same girl next day. At some point during the night, her immune system launched a wicked attack on her brain. We would later be given a name for this incurable beast, Autoimmune encephalitis. Hadley awoke with a headache and mild vomiting. By early afternoon she would be hallucinating and unable to see. By the time we made the 45-minute trip to the emergency room, she would be mostly unconscious and no longer know who we were. By the time we would have her transported to Texas Children’s Hospital, her blood pressure had declined to a frightening and life threatening 45/25.  Hadley’s glucose level was only 11 and her core temperature had already begun to drop.  Hadley had entered coma.

 We arrived at Texas Children’s Hospital with her having only minutes to live. Within two days we were told her brain was swelling.  We faced saying what we feared were our final goodbyes just before the doctors placed her on a ventilator. Our Hadley was a Warrior. She fought the disease that was wreaking havoc with her brain and awakened from coma.  Having come out of the coma, Hadley was challenged to have to learn to walk, talk, and eat again.  She had to learn who her Mom and Dad were having lost all memory of her family and who and what was familiar to her.  She battled her way back through hallucinations and countless hours of therapy.

 

Little did we know what the next two years would hold… 30 days inpatient with 9 days in PICU, 10 days in a coma, 17 days on a feeding tube, 8 days on a ventilator, 45 outpatient appts, 1 72 HR EEG, 3 short EEGs, 3 MRIs, 1 MRA, 3 cat scans, 3 lumbar punctures, 2 radioactive thyroid scans, 3 ultrasounds, 1 central line. Too many IVs to possibly count.  20 months of IVIG. 1 5-day steroid burst, 2 ER visits.

We have been battling this beast, Autoimmune Encephalitis, for two years now and Hadley has been declared to be in remission! We have seen tremendous progress. God has been so good!  Of course, we are not the same people we were two years ago. You cannot walk a journey like this one and remain unscathed. I’d be lying if I told you we had it all figured out. There are days we still grieve but most days we find ourselves overwhelmed by Gods goodness.

The IAES has been a huge resource for us! They recently walked us through an insurance appeal when our daughter’s insurance denied her life saving IVIG treatment! Within 48 hours I had all I needed in hand to appeal and win! This treatment was vital to Hadley’s care.  International Autoimmune Encephalitis Society has been a huge support in helping us advocate for Hadley and help us get her to where she is today: remission.

 Hadley Today

 


Donate to Support IAES and our Life Saving Mission


International Autoimmune Encephalitis Society (IAES) is a Family/Patient centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey.

Driven by the knowledge that “Education is Power”, International Autoimmune Encephalitis Society manages an educational support group for patients diagnosed with Autoimmune Encephalitis and their loved ones, empowering them to be strong self-advocates and advocates that will lead them to best outcomes and recovery. We are the premiere organization leading in these vital roles.

The Dark side of anti-NMDAr encephalitis – A Mother’s Story

The Dark side of anti-NMDAr encephalitis – A Mother’s Story


Donate to Support IAES and our Life Saving Mission


International Autoimmune Encephalitis Society (IAES) is a Family/Patient centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey.

Driven by the knowledge that “Education is Power”, International Autoimmune Encephalitis Society manages an educational support group for patients diagnosed with Autoimmune Encephalitis and their loved ones, empowering them to be strong self-advocates and advocates that will lead them to best outcomes and recovery. We are the premiere organization leading in these vital roles.

Your Tax deductible donations help us save lives and quality of lives.

Young Texas Woman with anti-NMDAr Encephalitis fights for her Life and the Life of her unborn child

Young Texas Woman with anti-NMDAr Encephalitis fights for her Life and the Life of her unborn child


Donate to Support IAES and our Life Saving Mission


International Autoimmune Encephalitis Society (IAES) is a Family/Patient centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey.Driven by the knowledge that “Education is Power”, International Autoimmune Encephalitis Society manages an educational support group for patients diagnosed with Autoimmune Encephalitis and their loved ones, empowering them to be strong self-advocates and advocates that will lead them to best outcomes and recovery. We are the premiere organization leading in these vital roles.

Your Tax deductible donations help us save lives and quality of lives.

Our website is not a substitute for independent professional medical advice. Nothing contained on our website is intended to be used as medical advice. No content is intended to be used to diagnose, treat, cure or prevent any disease, nor should it be used for therapeutic purposes or as a substitute for your own health professional's advice. Although THE INTERNATIONAL AUTOIMMUNE ENCEPHALITIS SOCIETY  provides a great deal of information about AUTOIMMUNE ENCEPHALITIS, all content is provided for informational purposes only. The International Autoimmune Encephalitis Society  cannot provide medical advice.


International Autoimmune Encephalitis Society is a charitable non-profit 501(c)(3) organization founded in 2016 by Tabitha Andrews Orth, Gene Desotell and Anji Hogan-Fesler. Tax ID# 81-3752344. Donations raised directly supports research, patients, families and caregivers impacted by autoimmune encephalitis and to educating healthcare communities around the world. Financial statement will be made available upon request.

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352-527-2470

IAES@AUTOIMMUNE-ENCEPHALITIS.ORG

Autoimmune Encephalitis Trivia Playing Cards

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