Joey’s Song

In October 2005, Mike and Nory Gomoll celebrated with joy when they adopted a beautiful baby boy named Joey from Guatemala.  Joey had large, chocolate eyes, a thick mat of dark hair piled high on his head, and an infectious smile.  Joey arrived to join his family when he was six months old, about the same age that his older brother and sister were when they were adopted from Guatemala as well.

Joey quickly adapted to life in the U.S. and loved playing with his older siblings.  He loved music, Elmo, and had an early appreciation for songs and  rhythm.  Things changed, however, when Joey was ten months old.

Joey was visiting his grandparents when he had his first seizure.  At first, his grandfather didn’t recognize the unusual, rhythmic movements of his arm and upper body when Joey sat on his lap. When his Aunt walked by and observed the scene, however, she knew that something was amiss.  Since Joey’s grandfather lived across the street from Illinois Masonic Hospital, his family members ran the short distance to the hospital for an evaluation.  Because of the unusual nature of his first seizure, Joey was admitted to the hospital and he received an extensive evaluation.  All of his initial testing was negative and Joey eventually discharged with the diagnosis of a simple febrile seizure.

But it wasn’t so simple.  Several weeks later, Joey had another seizure.  Because he had a fever at the time of the next seizure, Joe’s again was diagnosed with a febrile seizure.  With increasing frequency and unrelenting insidiousness, the seizures continued.  Sometimes Joey would just stare into space and have involuntary movements of his wrist, sometimes the seizures were much more ominous.  Early on, the seizures were almost always associated with fever.  Joey was started on phenobarbital for treatment of recurrent febrile seizures but his parents were told that he would eventually “grow out of it.”

Soon enough, Joey was having seizures with increasing frequency.  The recurrent attacks on his growing brain began to show adverse effects on his development.   Joey never learned to speak more than a few words, although he loved to interact with others.  He learned to communicate with loved ones and family members  in other ways.

As Joey continued to have seizures, he tried multiple different medications with little or no improvement.  His parents noticed that excitement  triggered seizures so they tried to keep Joey as calm with as little stimulation as possible.  The Gomoll family fell into a natural rhythm.  Mike watched after older and more active Sam and Julia and Nory stayed with Joey to protect him as much as she could from the constant threat of seizures.

Desperate for answers, Mike and Nory took Joey to see a pediatric neurologist at the Pediatric Epilepsy Center at the Children’s Hospital of Wisconsin in Milwaukee.  Joey and his family met with the physician there who, after hearing his story, diagnosed Joey with “classic Dravet syndrome.”  This was the first time that Joey and his family had heard of the severe form of intractable epilepsy associated with recurrent febrile seizures, developmental regression, behavioral changes, and prolonged seizures.

Mike states that once Joey received the diagnosis of Dravet syndrome, they “finally understood what was going on.”  While the Gomoll family continued to fight Joey’s seizures, they also found ways to revel in the small things.

“When you have a child with Dravet syndrome, life is pretty simple,” Mike remembers. ” Joey knew how to take out DVDs and put in DVDs.   He would do that over and over again as he watched Elmo movies.  The stuff that other parents would take for granted, you don’t.  You revel in every bit of connectedness that exists.  You celebrate every moment of joy, every moment that you’re not in the back of the ambulance.”

“A lot of my memories of Joey are of laying with him for hours after his seizures.  He would lay on my chest with his hand behind his head and lay quietly.  I knew he didn’t feel well, but we were there together, and that meant a lot to me.”

In March 2010, Joey died from complications from epilepsy.

Joey didn’t speak much, but he had several words for dance.  He understood rhythm since early childhood and music always seemed to calm him.  In Joey’s memory, Mike and the Gomoll family have started Joey’s Song , a nonprofit foundation supporting special needs children and all those suffering from seizures.  Joey’s Song has produced four CDs with contributions from famous artists such as Roseanne Cash, the Cowboy Junkies and the Crash Test Dummies.  Joey’s Song has an upcoming benefit concert in Madison, Wisconsin on September 19, 2013.  Please visit http://www.joeyssong.org to learn more about Joey and Mike Gomoll and the work Mike is doing to fight epilepsy.

And, to continue to raise awareness for all of us, please pass it on.

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Eliza, Purple Ribbons, and the Path to a Cure

When Eliza felt like it was time to do her part to raise awareness for epilepsy, she took matters into her own hands.

Literally.

As a recent high school graduate, Eliza took a year off before starting college so that she may have epilepsy surgery.  During her free time in a year otherwise filled with tests, hospital stays, and escalating anxiety, Eliza made a plethora of purple ribbons and informational flyers filled with facts and statistics about epilepsy.

“Wear this for me,” she asked, as she handed the ribbons out to friends and family members, then as she distributed them to local stores and businesses.  When Eliza’s friend, Julianna (see “Julianna and the Full-Circle Journey” for Julianna’s story) announced that she was going to study in Ecuador, Julianna took the purple ribbons with her to Ecuador as well.

Even after surgery was complete and Eliza started college at Hampshire College, Eliza continued her purple ribbon campaign.  During a final project relating to epilepsy for her arts education class, she handed out more purple ribbons and statistics about epilepsy to her classmates.  Now, Eliza reports that she sees a rainbow of purple ribbons on student’s backpacks at school, on neighbor’s coats at home in Vermont, and she dreams of them in homes in Ecuador.  It seems that small amount of purple satin can be enough to raise awareness over thousands of miles.

Although Eliza has had epilepsy since she was three years old, it wasn’t until recently that she was willing to talk about her seizures.  For most of Eliza’s formative years, she was embarrassed by her recurrent grand mal seizures and she tried as hard as she could to pretend that they weren’t there.  Even when Eliza had a generalized seizure in school and the other children were curious, she would shy away from discussing the event and move on to other things as quickly as possible.  Eliza’s parents responded by making sure they raised their daughter without allowing the fear of epilepsy lead to limitations.  Although seizures were a constant threat, Eliza knew the normal childhood joys of being able to swim, ride a bike, play soccer, and hang out with friends.

Looking back, Eliza credits her parents as much of the reason why she has been able to function so well in life despite her epilepsy.  “My parents never treated me differently nor implied that I couldn’t do something because I had seizures,” she remembers.   “Epilepsy was never part of the conversation.  They considered it a lot, but they did a really good job making me feel normal.”

Eliza’s neurologist is also part of why she has been able to do so well. “She recognizes who I am and has always treated me as a whole person, not just a person who has seizures.” For Eliza, the combination of a supportive family and an understanding doctor has made it much easier to get through the challenges of growing up with epilepsy.

The last seizure Eliza had at school happened when she was in sixth grade, then her seizures started to occur only as she was waking up in the morning.  Eliza was forced to miss school secondary to seizures but her illness was no longer as visible to her classmates as it had been before.  Eliza remained very quiet about her epilepsy for fear of others judging her until she was a sophomore in high school and when she began to consider moving away for college.

“Suddenly the gravity of moving away from home hit me,” she explained.  “What if I had a seizure in my dorm as I was waking up and there was no one there to help me?  What if I had a seizure when I was walking alone on campus?”  Eliza realized it was time to make a change.  Antiepilepsy drugs had never completely controlled her seizures and had led to some challenging side-effects.  Eliza knew that her options for better seizure control were a trial of a low-glycemic diet, placement of a vagal nerve stimulator, or epilepsy surgery to remove the seizure focus in her brain.

Eliza applied to college with her peers and got into Hampshire College – her top choice of schools.  Although she was excited and eager to move on to her next phase in life, Eliza deferred her freshman year on the last day possible for deferral.  It was clear to her that she should have epilepsy surgery to try to find a cure for her seizures during her year off from school.

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As Eliza came to grips with her epilepsy and learned to accept the uncertainty in her life as she grew, she also gradually became more comfortable talking about her seizures with others.  When she was 16, she started by painting a picture for the Expressions of Courage art contest for the Epilepsy Foundation.  When her drawing of an earth and the word “hope” written in multiple languages was chosen for the November page in the Expressions of Courage calendar,  Eliza had a tool to gradually step out and speak to others about her epilepsy.  Eliza remembers a teacher from high school as one of the first and most supportive people she spoke openly with about her epilepsy and the possibility of epilepsy surgery.  And once she made the decision about surgery, she began distributing purple ribbons.  “I went from being embarrassed and afraid to share to a complete reversal,” Eliza remembers.

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Eliza had epilepsy surgery on March 29, 2011.  Since her surgery, she has been seizure-free and now has been weaned off half of her antiepilepsy medication.  Her neurologist has plans to eventually wean her off all of her medication if she continues to remain seizure-free.  When I asked Eliza how it feels to be off some of her medications, her response was simple.

“It’s almost overwhelming at times.”

She’s excited for the possibility to be off medication but nervous at the same time.

Eliza is back at school and studying chronic illness and foreign languages. She states, “I hope to use my experience with epilepsy to make other’s experience with chronic illness more positive.”

At the end of our conversation, Eliza left me with one last beautiful image.

“Last year at the end of March, one year after my epilepsy surgery, my friend Julianna, my mom, and I went to the Epilepsy Walk in Washington D. C.  I’ve never felt so not alone.  There were literally thousands of people there and all the people with epilepsy were wearing purple T-shirts and all the people that were friends, family members or supporters wore white T-shirts.  It was amazing and uplifting to walk amongst a sea of purple T-shirts and to realize how prevalent epilepsy is.”

Eliza is not alone.  We are not alone.  Please pass it on.




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Meg: An RN with Epilepsy

When the neurosurgeon who performed Meg’s left temporal lobectomy was asked to describe what he saw at the start of her epilepsy surgery, he paused and explained through a undulating blue mask, “I’m looking at a bunch of yellow, contused brain slapped up against the skull that is a remnant from Meg’s previous injury.”

The surgeon’s exact description of Meg’s brain is easy to remember because portions of her surgery are available on tape and were visible for all of the Omaha metropolitan area to see.  Over the whir of a bone cutter and the staccato beep of a heart rate monitor, you can also hear the hushed buzz of the operating room staff working as the neurosurgeon comments on the findings in Meg’s injured brain.  Prior to surgery, Meg made the courageous decision to allow a local television station in Omaha, Nebraska tape portions of her pre-surgical evaluation and then parts of her epilepsy surgery to help raise awareness and inform others about epilepsy.  Even though she’s not awake, if you look closely during the video of the surgery, you can see a wisp of Meg’s dark brown hair peeking out bravely at the nape of her neck, as if her ebullient and bright personality could not be sequestered even in the confines of the most sterile and grave settings.

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Meg’s story began in the spring of her freshman year of high school, when she felt like she hadn’t a care in the world.  She was playing on the high school basketball team, had a great group of girlfriends, and had everything she hoped for.  Then one March afternoon, everything changed.  When an older girlfriend drove Meg and a group of friends home from school, the car collided with a tree on Meg’s side of the vehicle.  When Meg was being evaluated in the Emergency Room immediately after the car accident, she suffered a generalized tonic clonic seizure — the first of many to come.

Meg remained in a coma and on life-support for a week following her car accident.  When she finally awoke and studied her face in the mirror, all she noticed that was drastically different was big brown pieces of hair standing up at an odd angle on the left side of her head.  Meg’s mother gently explained that the physicians that treated her in the emergency department had to shave the left side of her head to monitor her intracranial pressure.  Meg was relieved that after a serious accident, all that had changed was her hair.  She didn’t know what was brewing inside.

Meg’s hospitalization after the car accident and traumatic brain injury was followed by a longer stay at a local rehabilitation center where she concentrated on physical therapy, occupational therapy, and speech therapy.  Because Meg’s brain injury was in her left temporal lobe, she had particular difficulty with short term memory and speech.  Meg states that ever since her accident, she’s had difficulty finding the right words during conversations and naming objects that used to seem commonplace.

Despite her major accident and injury, Meg returned to high school with her class in the fall of her sophomore year after a period of rehabilitation with determination and confidence.  Meg wasn’t able to participate in her beloved basketball any more — the risk of further concussions or closed head injuries was too great — but she was pleased to be back amongst her peers.  As a result of her injury, Meg required extra time on her tests at school and some extra accommodations for learning, but she did well in her courses and achieved her dream of acceptance into a nursing school when she graduated from high school.

And because epilepsy is never predictable and tends to strike at the most inopportune times, Meg had her first complex partial seizure when she was standing in front of a class of nursing students giving a presentation about a pediatric nursing topic.

Meg wrote about her first complex partial seizure on the website http://www.myepilepsystory.org:  “. . .all of a sudden, out of nowhere, my heart began to race—not out of nervousness, but more like I was running from a train and couldn’t get away. I kept trying to swallow, but my mouth was too dry. I had prepared for this presentation, but the words I was planning to use just weren’t coming out.

“I tried to take some deep breaths to relieve what I thought was nerves, but I couldn’t even gather the breaths. The scariest part was knowing how important it was to make eye contact with the entire audience during a presentation, but for 15 seconds I felt paralyzed and blankly stared, unable to look away from one side of the room. After what seemed like forever, I regained my composure and was able to finish the last minute or so of my presentation”

When the event was over, Meg was able to complete her presentation.  A nursing instructor who saw the event, however, approached Meg later and suggested that she see a neurologist.  Soon Meg was started on her first antiepileptic drug which eventually led to another, and another, and then a different one.  Meg tried a total of four anti epileptic drugs at their maximum doses prior to her decision to have surgery.  As her stress at school increased, her seizure frequency increased as well.  Though Meg was passionate about becoming an RN, she had to slow down in the pace of her studies because the medications to treat her seizures were affecting her memory and concentration.  With hard work, true grit, and true devotion to her chosen profession, Meg graduated as an RN one year behind the class that she started with, yet lightyears ahead of the grips of epilepsy.

After graduating from nursing school, Meg worked as a pediatric nurse in an outpatient clinic and then as a school nurse in an elementary school.  Though she loved interacting with children, Meg eventually moved from areas of direct patient care to phone triage because of her worsening breakthrough seizures.

Several years after graduating from nursing school, Meg became pregnant.  Despite taking escalating doses of antiepileptic drugs during her pregnancy, she delivered a perfect baby boy, who is now three years old.   The significant hormonal changes that characterized the period after Meg’s pregnancy caused Meg’s epilepsy to spin out of control.  Her seizure frequency increased, several more medications were unsuccessful and she was determined to be a candidate for a left temporal lobectomy.  When the local news approached Meg and asked if she would be willing to participate in a series of feature news stories following her through the surgical experience, she agreed.  Although she was nervous to allow cameras and the public to view her at her most vulnerable, she thought it was an important way to tell part of the real story of epilepsy to the general public.

Meg in the hospital prior to her epilepsy surgery

Meg in the hospital prior to her epilepsy surgery

Meg’s surgery has proven successful.  She will celebrate the two year anniversary of freedom from seizures this April.  Meg still takes high doses of three antiepileptic medications but the constant dizziness that she assumed was a medication side-effect prior to surgery is gone.  Meg is now also working as a nurse case manager for at-risk mothers in the Omaha area to teach infant care and help with the newborn transition.

In addition to doing her part to raise awareness about epilepsy, Meg hopes to help others that are experiencing seizures cope with their illness.  To do this, she started Camp YouCan, a summer camp for children with epilepsy in Nebraska.  Camp YouCan is a day camp where kids with epilepsy can come together to play and learn about how to cope with their illness.  Meg was able to coordinate donations from local organizations and businesses so that 24 children could attend last year and she is planning for a bigger camp with an overnight event this summer.

From a fateful afternoon car ride to a news story that touches thousands and a camp that can impact a child’s life forever, Meg has turned her tragedy into a multitude of triumphs.  The links to videos of Meg’s epilepsy surgery are attached below  — you may want to grab a kleenex.

Please pass it on.

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Meg with her parents

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Meg and her husband

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Meg gives a “thumbs up” while wired for an EEG

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Meg at Camp YouCan, a camp she founded to help children with epilepsy

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Carrie and the Gift of Perspective

If you believed the stereotypes, Carrie would be far from what you would expect in a typical patient with epilepsy. She is a successful professional who works as an associate director of an internship program at DePaul University, a mother of a happy, healthy little girl, an activist who volunteers with political campaigns, and still someone who lives with intractable seizures.

“When I tell people I have epilepsy, it feels like they are seeing another side of me.”

But through Carrie’s successes, achievements, and major milestones met, the “side” of her that has been occupied by epilepsy remains ever-present.

Carrie’s seizures started when she was 11 years old. First they appeared as what her parents described as “staring spells” combined with an odd nervous sensation that led to a sense of drowsiness.  Concerned that she was having fits of anxiety, her parents brought her to a psychiatrist for evaluation.  After determining this was not simply a case of anxiety, eventually an EEG was performed and she was diagnosed with a “seizure disorder.”   Carrie was started on the first of a long series of antiepileptic medications to treat her seizures and within a couple of years, received the official diagnosis of epilepsy and told by various doctors “you might just grow out of this”.

Over the next 25 years, Carrie tried over ten antiepilepsy medications, all with a different kaliedescope of side-effects and temporary successes.  Although her seizures are so mild that no one can tell she’s having one except herself, when she was 25 years old, she had her first grand mal seizure and it seemed as if her whole life changed.  Carrie realized that her grand mal seizure occurred after a period of high stress and little sleep.

“After that point and until this day” Carrie said, “I never compromise on sleep.  When my daughter was born, my husband did all the night time feedings.  If I can’t fall asleep at night, I have to sleep later in the morning to make sure that I’ve slept a full 6 hours.”

“I know that if I were to have a grand mal seizure because I was sleep deprived and it was something I could have prevented, it would be devastating.”

When Carrie was 29 years old, she had a temporal lobectomy and dreamed that she would one day be free of medication and be free of seizures.  Several years after the surgery, she is on the same amount of medication that she was taking prior to the surgery, but the number of simple partial seizures she was having dramatically decreased from 10-12 each month to just  3 – 5 each year.  Carrie feels like this is some degree of success, even if it isn’t the ultimate goal of seizure freedom.  In the end, Carrie’s walk with epilepsy has given her a very positive perspective on life in general.

“Epilepsy has given me a stronger appreciation of life and has made me feel more empathetic for people with worse diseases.  When I find out that someone has something like multiple sclerosis, I know that it affects their entire life and their entire family just as epilepsy has affected mine.  My epilepsy could be a lot worse.  It’s not like I’m dealing with cancer.  I think I have a more grateful attitude as a result of managing this disease and the risks it presents.”

Carrie states that her experiences with seizures have also given her tremendous appreciation and gratitude for the health and happiness of her 3 and a half year-old daughter, Norah.  Although Carrie had to stay on her seizure medication throughout the pregnancy to reduce the risk of having a seizure and potentially harming the baby, Norah is active, intelligent, and perfect.  Norah has had three complex febrile seizures associated with high fevers and viral illnesses in her first few years, putting Carrie on “high alert” to watch her daughter for more seizures any time she is ill.  With her history and the recurrent febrile seizures, Carrie knows that her daughter is at increased risk of developing epilepsy in the future, but she prays that the stars will align on her side this time.

Perhaps most apparent and above all, epilepsy has bred resilience and strength in Carrie beyond all else.  When I asked her what message she’d like to convey to others touched by seizures, Carrie said, “Epilepsy is part of me, but not all of who I am.  I’m not going to let this stop me from doing what I want to do.”

When I hung up the phone after talking with Carrie, I realized that short of freedom from seizures, Carrie found what we all hope for.  The ability to own a disease that has potential to overtake us is invaluable.  Carrie’s positivity, gratitude, perspective, and fortitude were some of the keys to her success.

Again I remembered that the more we talk, the more we understand.

Please pass it on.

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