Autoimmune Encephalitis Alliance

Sandra Stein capturing heart and sole in her Bloom Article

I am in awe of writers… their ability to choose the exact word to bring the emotion or feeling directly to the reader. I am there. I am her. I feel this about Sandra because she is a mom warrior. And not only that, but a mom warrior who is able to share her war stories with grace and poise. Please see her blog post for Bloom, dated Friday October 18th.

Nothing is Permanent

by Sandra Joy Stein

When my son was two years old, he played like most toddlers I’ve known. He built block towers and yelled in frustration when they toppled down. He climbed every structure at our neighborhood park and protested when it was time to leave. He complained when a beloved toy stopped working, broke, or the batteries ran dry. I decided, half-jokingly, that I would try to teach him the Buddhist Law of Impermanence—the notion central to Buddhist teaching that things change and nothing lasts forever. I suggested to my husband and other parents, with a strong dash of humour, that this law would ease our children’s sense of loss or disappointment, which would only intensify as their lives progressed. I do not claim to be a master of Buddhist thought, but it did occur to me that if our children were to know and accept the Law of Impermanence at a young age, it would increase their chances of living happy lives.

When an autoimmune encephalitis rendered my formerly healthy son severely neurologically compromised at two-and-a-half years old, my lighthearted lessons to him became my son’s own profound teachings to me. In two weeks he went from crafting percussion instruments out of anything he could get his hands on to thrashing around in a hospital crib. He went from exclaiming excitedly “Mommy! An upside-down M is a W!” to being non-verbal. He went from riding a two-wheeler with training wheels for miles at a time to being non-ambulatory and tube-fed. We lived in hospitals for 15 months before being discharged to home with near-round-the-clock nursing care, a wheelchair, a supine stander, a bath chair, and a rigorous home-based therapy schedule. Our former lives a distant memory, it was clear: things had changed. …
To continue reading Sandra’s blog for Bloom, please click here. Sandra also wrote an article for the New York Times that we referred to in an earlier post.

 

Sharing A Story- A Brother’s Homecoming

This post was sent to us by a young man who has a brother diagnosed with Autoimmune Encephalitis.  You can share your story about AE. Please read on for a sibling perspective:

June 10, 2013 marked my brother Sammy’s return from Duke after 8 long months. There were no balloons, parades or red carpet moments, just a quite, simple happiness and of course, a family again. Sammy seemed okay, actually better then I had expected. My last visit to see him in Durham, North Carolina was quite painful for me.  Sam was agitated and impossible, and I felt like I was in the line of fire. And I hated seeing my mother having to be constantly in that situation; I could see the pain she was in, even though she pretended to be okay. I felt bad for my mom, sad for my brother and guilty because I could not wait to leave; it was a horrible combination of feelings.

Sam was quiet the first week he was home, but not in that lost, flat, lack of awareness kind of way like when he first got sick. It was actually a good quiet, he seemed to be observing, taking everything in and happy at times. Of course, he was no longer the rowdy and annoyingly clever little brother he had once been before his illness, the inflammation in his brain and his downward spiral, but I am slowly accepting that. He is different now, we need to all know that. I also know that my mother, in certain respects “mourns” the loss of the boy he was. She has not ever spoken a word of this to me, but it is written all over her face.

Of course, I walk on egg shells frequently, depending on the type of day Sam is having. I remember all to well his violent outburst, his physical attacks, although somethings are a bit more of a haze. It is hard to imagine that something that has monopolized our lives for the last three years, is at times a fog. My mother calls it a “survival fog”. I tread carefully, but not always happily. I have exploded at times, sobbed uncontrollably and I am still angry.  But angry at who, or angry at what, or who to blame ….I do not know. What I do know is that at 16 years of age, I wanted to be teenage selfish, I needed help, I wanted attention and I was not okay. But I was stuck in an amalgam of guilt, frustration, intellect, compassion, fear and anger, which riddled my body and mind far to often.  I tried to throw myself into my schoolwork, but it threw itself back in my face hard. My A’s turned to C’s, restful sleep a thing of the past, and the ability to concentrate had started to disintegrate. My dad said this too shall pass, it just all took too long, a pace I was not accustomed to. My emotional needs have always been met by my parents often before I even had to verbalize them. I swear, my mom reads minds! I had been spoiled by parental affection, their patience and time, and now I felt alone and scared, I was being shuttled back and forth between grandparents and family friends, my mother was living in Durham, and my father was traveling back and forth in between work.

Over the last three months, I have managed to stake my claim on some of that time, and it’s been great, teenage great! I actually feel stronger and more independent , a strange thing to say, but I do feel that I am a survivor as well. I now possess many of the skills and attributes one can only acquire by overcoming great obstacles. Of course, my strength is tied to my brother’s strength. And yes, he is annoying me again, but I have come to appreciate it; it has become a sign of his progress.

Elan K.

 

Sharing a Florida Family Story: Fighting for the Prize

We are hearing from many of you. Your stories fill me with passion to help families with this disease and fight to figure out a way to conquer it. But fighting is exhausting as we all know. And from somewhere inside of us, we keep finding a way to another path, another treatment, another doctor or a prize to keep us going. This story is shared by a true fighter from Florida named Deborah. Her family has gone through the struggles that so many of us know but one thing that amazes me is her fortitude. She shares her story here:

Gotta keep my eye on the prize….

My son Sammy had been out of “regular” school for approximately 18 months. It has been difficult for me to keep track of time, or rather for time to keep track of me; an odd, surreal  state I have been trapped in.  It consists of before Sam was sick and after Sam got sick, it is really that simple. And I as his mother have been suspended in a time warp of sorts caring for him, maintaing his treatment, managing his meds, advocating for him, organizing his multitude of appointments and of course, watching his every move (just to name a few).
Sad, long days left me wondering when will things ever go back to “normal”?  Will I ever know that feeling again? I took it all for granted….. For me, part of “normal” meant that Sam had to return to school, that was my prize. Clearly, I was exhausted from the disease but well beyond that was the secondary loss my son was having due to a lack of social and emotional norm for a teenager. Month after month, the wear and tear of that became more apparent to him and to me. It was a dull ache that plagued my mind and perhaps the force of that propelled me forward. 
I longed for the boisterous, loud, messy, and sometimes annoying schoolboy my son had been. The forgotten homework assignments, the missing textbook, the backpack that looked like it could explode, the filthy uniforms, the occasional phone call from a teacher, that is what I craved. How odd that the things that upset me, now became my goal, my “prize”.  But as part of my son’s road to recovery, my intent was to return him to the ninth grade.
This week marked that occasion; it was filled with a happiness, pride, trepidation, doubt and utter disbelief. I can’t believe I did it, it almost doesn’t seem real.  After looking at every school within a sixty mile radius of Miami, we decided the best school for him was the school closest to our house. Sometimes practical wins. 
The first day of school, after drop off, I did not know what to do with myself. My “to do” list was about 3 years long, and I didn’t even know were to  begin. I had fantasized that the minute Sam started to school I would grab a mindless National Enquirer, a bottle of wine, head directly to a lounge chair at the beach and never get up. But instead my first stop was the local hardware store to get “somethings we needed for the house”. I slowly wondered the aisles of the hardware store, my frantic pace was momentarily gone, I even said hello to strangers, and it was bliss.  -Deborah
Thank you Deborah!
Please share your story of triumph, hard won wisdom, sacrifice and lessons learned.  We are a community and have much to learn from each other.

 

AE makes us “wiser, wearier and stronger”

I recently read an article about myself in the New York Times—well it wasn’t my name or my child but it was my story. Sandra Joy Stein wrote the article titled “Becoming the Parent With the Child in the Wheelchair.”

I don’t know Ms. Stein personally, but I know her life. I had a young child with autoimmune encephalitis. I remember a moment much like hers while walking Florence in her adaptive stroller around Duke University campus. I needed air and had no help at home for Florence. So I bundled her up and buckled her in the stroller and off we went. She was a little grouchy being cinched into position to keep her head and body upright by the stroller.

Florence and Family_StrollerI thought the walk would help. But it was a crisp fall day and others were out too with kids and dogs. We got the looks that you dread in these situations.  I couldn’t help but think that my child was running just like their child not long ago.  And I could have been those moms, redirecting my child from staring at the child in the adaptive stroller.

Sandra, Helen, Jennifer, Deborah, Mary, Natalie, me and many more mothers, fathers, siblings, grandparents are now stronger and different people for enduring the tough road of having a healthy child turn into a sick child.

And sometimes that road begins a new journey… one that you never thought was in your future. Our journey has led us to start the Autoimmune Encephalitis Alliance.  It led us to organize the Florence Forth road race. We want to help other families facing this disease and find a cure.  I’ll leave you with a quote from Sandra’s story, “my child’s illness has not made me an angel, but it has made me wiser, wearier and stronger than ever before.”  Thank you for sharing Sandra.

AE Alliance Awards First Grant

The Autoimmune Encephalitis Alliance awarded its first grant to the Autoimmune Brain Disease Program at Duke University Children’s Hospital.  Co-directors of the Program, Dr. William Gallentine, Pediatric Neurology and Dr. Heather van Mater, Pediactric Rhuematology, accepted the grant and will use the funding to advance their ground-breaking, multidisciplinary clinic and related research.  The $11,000 grant was raised from the first annual Florence Forth road race in March 2013.  (Read the blog post about the race.)  Florence Forth will be run again on March 1, 2014 in Durham, NC.

A core goal of the AE Alliance is to support multidisciplinary care and Centers of Excellence for diagnosis and treatment of autoimmune encephalitis. As additional funds are raised, the AE Alliance plans to support additional institutions throughout the country to advance care for AE so no one faces this disease alone.

NC Premiere of Across the Starting Line

On July 11, 2013, the Autoimmune Encephalitis Alliance hosted the NC Premiere of Across the Starting Line, a Short Film, and Book Reading by Susannah Cahalan, Author of Brain on Fire. The event was held in Durham, NC at the Full Frame Theater at American Tobacco Campus, a boutique theater built in collaboration with Duke University Center for Documentary Studies and Full Frame Documentary Film Festival. It provided an intimate setting and was perfect for showing the film.

Across the Starting Line is a seven-minute short film describing the journey of two families and their doctors connecting to start the Autoimmune Encephalitis Alliance.  View the 30 second trailer of Across the Starting Line.  The film was produced by Catherine Orr and Elena Rue of StoryMine Media.  They were amazing to work with and produced a great short film.

S_Cahalan_bio_photoIn addition to the film, we had the pleasure of having Susannah Cahalan attend and read from her #1 New York Times bestseller Brain on Fire. Susannah is our newest Board Member of the AE Alliance. You can learn more about Susannah and her book at www.susannahcahalan.com.

This event raised $14,328 for the AE Alliance.  Thank you to everyone who attended.  The AE Alliance will use these and other donations to build infrastructure (like this website), convene doctor working groups and raise awareness about AE.

Florence Forth

Our family has always been a running family. A jogging stroller lived on our porch or dining room for years. We ran when full time jobs became stressful, while Laura and Florence napped as babies, and just exercising our dog. When Florence fell ill with an unknown disease at age two, we increased our running to handle the emotional stress. That disease later was named autoimmune encephalitis (AE). And when AE claimed her life at age 6, we ran some more.

FlorenceForth-Lockup-with-Tag

Maybe it’s because running provides a sense of accomplishment or the fact that it’s forward movement toward a goal. When we started the AE Alliance, we knew the first community event would be a race in honor of Florence.

And so on March 1, 2013, the first annual Florence Forth road race was held in Durham, NC. The event included 700 runners, 120 volunteers, 80 police and 21 local businesses! The event was a success raising $11,000 for the Autoimmune Brain Disease Program at Duke University!

FF_Faces@FinishBut the success wasn’t just having runners show up for the race. It was the fact that the community encircled us in this effort- a local running store donated timing and support, bakeries and cafes gave wonderful food, businesses donated sound equipment, offered free prizes to participants, provided registration tents and more. Our family was blown away by the care and hope that this event created.

Florence died on March 4th, 2012. She left us with a command to “March Forth.” We were inspired by our daughter’s courageous fight against this disease and felt called to share this command with so many others. That’s why we named the road race Florence Forth.  You can’t choose what life gives you, but you can choose how you deal with adversity. Florence Forth.

We’ll be back on March 1, 2014 with the second annual Florence Forth road race. Come Florence Forth with us!