Hayden’s Story

In wrapping up our 5th Annual eRACE 5K & 1 Mile Walk, we wanted to highlight an inspiring story to show the impact of the funds raised during our eRACE and other special events. Lisa S., an Epilepsy Association Board Member and eRACE Committee Member, was an eRACER who fund-raised on behalf of EA. Lisa was the top fundraiser who raised over $3,100! Hayden, Lisa’s son, is three years old and is living with epilepsy. Here is their inspiring story:

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Hayden was diagnosed with a severe form epilepsy known as Dravet Syndrome at 9 months of age. He suffered from his first seizure at just 4 months old lasting 20 minutes, he spent a week-long stay at the hospital where they ran test after test trying to determine what had happened. By the time he was 9 months old he was having over 50 Myoclonic Seizures a day as well as Grand Mal Seizures every other week that could range anywhere from 20 minutes to 3 hours. Hayden spent much of the first year of his life in and out of the pediatric intensive care unit of the hospital. Just after Hayden’s first birthday he suffered from a 2-hour long seizure that caused his respiratory system to crash. He was intubated and taken by life flight to the hospital. Two months later it happened again this time the seizure lasted 3 hours and we nearly lost him. Hayden’s seizures were becoming so severe that rescue medications and daily anti-epileptic drugs were not working for him. In October of 2015 he was started on the Ketogenic Diet, he remained on the diet for a year and a half only suffering from 2 seizures. The diet saved his life.

Due to the severity of Hayden’s seizures it caused him to be non-verbal as well as struggle with his balance and movement abilities. As Hayden grew older so did his tolerance level for the diet, and the seizures returned. Now at 3 years old, Hayden is off the ketogenic diet and back on multiple AED’s. His seizures are currently controlled, only suffering from break throughs with growth spurts and illnesses.

Hayden has been going to physical therapy and has made tremendous strides in his movement abilities. He has also been working with a speech therapist and able to say between 30 and 40 words, with a positive outlook to gain more. The support that the hospital, his doctors, and Epilepsy Association has provided not only to Hayden but our entire family has been life changing during this journey. I encourage you to join and walk with us as we honor Hayden and the rest of the individuals and their families suffering from epilepsy. Let’s work together to eRace the historic stigma of epilepsy.

Scanlon team

EA’s 2017 Client of the Year!


At the Epilepsy Association, we see clients overcome obstacles in their lives on a daily basis. Each year at the Epilepsy Association’s Annual Meeting, one client is chosen and recognized for their significant achievements in overcoming their struggles related to their epilepsy and mental health issues. It is hard to choose just one recipient to celebrate, as we have seen such great improvements with all of our clients. This year’s recipient of the Client of the Year Award is Dean Bratsch.

Dean started having seizures at 12 years old, and was diagnosed with epilepsy during his teen years. He was having grand mal seizures into his early 20’s. At this point, he learned about the Epilepsy Association, and became a client in February of 2013. He was looking for help with his seizure control and independence, and also his feelings of anxiety and isolation.

When Dean started seeing a case worker here at the Association, he began to learn important coping skills with his anger and anxiety. He also started seeing a new neurologist who told him he might be a candidate for epilepsy surgery. During his time with the Association, Dean has moved into his own apartment and has become more independent. His communication with his doctors is much better, and he is better at managing his own life.

On June 22, 2017 Dean graciously accepted his 2017 Client of the Year Award, and thanked his mom, the rest of his family, friends, and the case workers who have helped him during his time here at the Association.

Dean is continuing to work towards his goals and dreams with the love and support of his family, friends, and staff at the Epilepsy Association.

Congratulations to Dean on all of his accomplishments!

Help Raise Awareness for Epilepsy on Purple Day®, March 26

 

Editors’ note: In recognition of Purple Day® on March 26, Clare Karlovec shares how epilepsy has affected her younger sister and their entire family, and why Purple Day® is so important to raise awareness about epilepsy and support those with seizure disorders.

          The first seizure I remember my little sister Julia having was in our family’s parked car in the garage; Julia was two years old, and my twin sister Allison and I were seven. My mom had just wrangled all three of us into the minivan, with Julia in her car seat, and we were about to set off for our piano lesson when we noticed Julia making noises and her body shaking. At first, we thought Julia was being funny to try to get our attention, but then we noticed the worry our mom had as she quickly jumped out of the driver’s seat and rushed to Julia’s side. Since then, that worry that our mother expressed was transferred unto us; the brief moment that we had thought she was being funny had completely vanished, and we worried about every seizure and the possibility of more ever since.

          Epilepsy became a part of our lives. Our parents tried to educate me and Allison as much as possible about what epilepsy was, and what to anticipate when Julia was going to have a seizure. Julia’s seizures became less terrifying to us as we started to know what to expect and how to handle it. We had brochures pinned to our kitchen refrigerator underneath smiley-faced magnets about the different types of seizures and how to respond and help her.

          We watched as Julia tried many different medications, taking many pills at a time, to find the right combination and dosage to manage her epilepsy. Her medicine would work for a couple of months and lessen the number of seizures she had, but oftentimes its affectivity would decline and the number of seizures would climb up again before she had to try a higher dosage or new medications. Allison and I would make a fuss about having to swallow a Tylenol, so seeing Julia take six pills at a time really put things in perspective for us. Suddenly a tiny Tylenol didn’t seem so bad.

          We listened to her talk about how she felt like she was different and not accepted because of her epilepsy. We knew that Julia was having a difficult time accepting her epilepsy because she felt so isolated. Even though Julia may have felt alone at times, we made a constant effort to prove her otherwise by sticking by her side, believing in her, and supporting her in anything that she wanted to do. We were constantly worried about her safety, and always wanted to be as protective as possible, maybe sometimes “too overprotective” as she likes to say.

          What our family’s journey with epilepsy has taught us is that spreading epilepsy awareness is so important. It’s surprising how limited people’s knowledge about epilepsy and seizures is. I’ll never forget about the time Julia had a seizure at a restaurant during dinner, and a woman at a nearby table exclaimed, “Put a spoon in her mouth!” These kinds of comments demonstrate how most people don’t know what actions to take when someone is having a seizure. Once you know what to expect and how to react to someone seizing, you can handle the situation more easily, and in turn create a calmer environment for the person seizing to regain consciousness in.

          Julia has amazing strength and courage that she sometimes doesn’t even realize she has. I admire her for facing many physical and mental challenges along the way with such determination and the willingness to keep trying. Her epilepsy may make her different, but she certainly does not let it limit her, or stop her from enjoying life. I continue to be inspired by her.

12th Annual Winter Walk Featured Families

The Holman/DeJong Family                       The Yoder Family

Each year at the Winter Walk, we honor two families with the title of “Featured Family” for their outstanding efforts in coping with epilepsy on a daily basis. This year, we have two very deserving families being honored: The Holman/DeJong Family and the Yoder Family. Congratulations to these two wonderful families!

The Holman/DeJong Family was nominated by an individual who is very involved with the Epilepsy Association, Lacey Wood. Melissa Holman, mother of Mysha DeJong who has had epilepsy since she was 18 months old, openly shared her family’s story with us. They were told that Mysha would “never walk, never talk and would be severely mentally disabled due to a massive damage in her left hemisphere.” But the family never gave up hope! After struggling for years with seizures, Mysha had surgery on August 11, 2011. She started at a new high school that October, and was attending school full time by November. Since her surgery, Mysha has been seizure and medication free. One of the family’s proudest moments was seeing Mysha graduate from high school last year despite all the obstacles she has had to overcome in her life. Her story is so inspirational that she was featured on MTV and Fox 8 news. Click on the links below to read these stories:

MTV

http://www.mtv.com/news/2166381/teen-graduates-brain-surgery/

Fox 8 News

http://fox8.com/2015/05/18/rocky-river-student-beats-all-odds-to-graduate/

The Yoder Family, nominated by mother Jennifer Yoder, has also had to endure a lot of complications as a result of daughter Ethel, nicknamed “Eppie,” having her first seizure when she was only two weeks old. Jennifer was told that Ethel would not make it to her 8th birthday due to a rare form of a mitochondria disorder. But through the fear of this reality, the family viewed each milestone with a special meaning. They enjoy every moment with Ethel and focus on finding a cure. Through all of the hospital and doctor visits, Jennifer says that “our family faced many bad days, but also had several good days. These are the ones that I want to remember. Her smile became my sunshine on those dark and stormy days.” Ethel’s 8th birthday has come and gone, and Ethel is still powering through every obstacle that is thrown at her.

Thank you to both of our Featured Families for sharing their stories with us. We hope that you can join us on Saturday, January 28th, from 8 a.m. to 10 a.m. at SouthPark Mall in Strongsville to support not only the Holman/DeJong and Yoder families, but also all of the other families coping with epilepsy in the Northeast Ohio community.

And the Winner is…

And the Winner is…

Each year the Epilepsy Association recognizes a client that has made significant progress in their goals related to their epilepsy and mental health.   Selecting the client of the year is a difficult process as we are so proud of all of the individuals that we serve.  This year Julia Clouden- Jones was selected as the Epilepsy Association’s Client of the Year.  

Think back and reflect on your own life.  What have you accomplished in the last 19 months? Did you lose that 15 pounds? Get a new job? Clean out that closet that has been collecting all of the odds and ends in your home?   

In the last 19 months there have been 2 holiday seasons, 2 spring break weeks, 1 tax season, and of course who could forget , 1 NBA Championship win! 

The last 19 months for Julia have been quite the adventure. When Julia came to the Epilepsy Association she was homeless, in an unhealthy relationship, had uncontrolled seizures that were epileptic as well as non-epileptic, did not have health insurance, and was desperate for help.  She wanted to stand on her own two feet, and needed some help.  Julia was eager to begin services and once she did she moved along so quickly.  Throughout her time as a client in the Adult Case Management Program Julia was able to completely turn her life around.  

In the last 19 months Julia was able to:

  • End her relationship and move forward
  • obtain and maintain health insurance
  • obtain and maintain disability benefits
  • engage in counseling
  • obtain and maintain her own apartment
  • engage with a neurologist who informed her that she was candidate for epilepsy surgery
  • had a successful epilepsy surgery which significantly reduced the frequency and severity of her seizures 
  • Due to her counseling and other positive  changes in her life her non-epileptic events  are no longer occurring
  • increase her self esteem
  • improve relationships with family members

Julia is a true inspiration! On June 16th, 2016 Julia was awarded the 2016 Client of the Year Award.  She humbly accepted her award and spoke at the Annual Meeting about the impact that the Epilepsy Association has had on her life.   Tears filled the eyes of the audience members as they witnessed this amazing example of strength and perseverance.  

Julia continues to surpass all of her goals and sets new ones for herself. We look forward to seeing where her journey takes her as we know it will be a beautiful ride.

Congratulations Julia!

Amazing Kid Alert!

Amazing Kid Alert!

As a 5th grader in the Hudson School District, Camden Frank was assigned to do a Passion Project.  Camden selected to use epilepsy for his topic as he has a family friend recently diagnosed and has seen how fear of the unknown and fear of the future took over this family.  Camden went above and beyond his assignment by preparing a 24 minute documentary on epilepsy.  He included information about seizure types, diagnosis, medications, and seizure first aid.  Camden used his entire 5th grade school year to produce this documentary.  He conducted interviews with epilepsy professionals as well as individuals living with epilepsy.  He did this all on his own while his mother filmed the interviews and drove him to where he needed to be.  It took Camden 3 attempts to make his documentary before finally being satisfied with the product.  His first was created on his iPod Touch and it was 5 minutes long.  He felt that it did not show the full picture of epilepsy.  The second was completed on his laptop and was ten minutes long.  He was still dissatisfied and did not feel that enough was presented in that time to help others understand the significance of epilepsy.  His final version was presented to the Epilepsy Association staff on June 16th.  EA staff were moved and in awe of his project and the kind and talented person that is Camden.  He was supported that day by his mother and sister and you could see the pride radiating from them.

Camden and his sisters had a lemonade stand in their neighborhood and raised $100 for the Epilepsy Association. Camden presented this check to Kelley Needham, CEO of the Epilepsy Association following his video presentation.  Camden and his sisters are planning on having 2 more fundraising lemonade stands for the Epilepsy Association. 

Camden is one in a million.  He truly is an amazing kid as he so generously spreads epilepsy awareness and education.  He is a true role model for children of all ages and we are honored to share the same passion for epilepsy and epilepsy awareness. 

Congratulations Camden on a job well done!

“A person’s a person, no matter how small.” -Dr. Seuss

Children CAN make a difference! Take Ryan Wood for example.  At 4 years old he is preparing for kindergarten, looking forward to summer T-Ball,  and enjoying being a big brother.  He is also making positive change for other children.  Ryan participated in the 2016 Winter Walk in which he rode his scooter the entire course at Strongsville Mall.  When asked why he did this he reported, “I want to help other kids. There are kids that have epilepsy that can’t be here for all the fun”.  Ryan spent several weeks campaigning by making phone calls to family and friends as well as posting a series of videos on Facebook to talk about epilepsy and how important it is to help others.  His videos were shared on many different Facebook pages and he received donations from several different states!  Every day after preschool he would ask to view his website to see who donated.  He then would call and thank them.   Ryan’s success was so much more than he and his family could have imagined!  He raised $825 for the Epilepsy Association which made him to top fundraiser for his age group.  Ryan attended  the

Purple Day Power Lunch at the Epilepsy Association in which he received an award for his efforts.  He was permitted time at preschool to share his award with the classes and talk about epilepsy and helping others.  Ryan’s preschool, St. Augustine Manor Child Enrichment Center, also hosts a Purple Day event in which the children learn about epilepsy through an in-service or puppet show, wear purple, and create purple projects.  The children created a poster this year that currently hangs for all visitors to the Epilepsy Association to see.

Ryan may only be 4 years old, but his efforts raised funds to provide support services to children with epilepsy and their families at no cost to them.

If you would like to learn more about the services that Ryan raised funds for, or helping your child’s school set up an in-service to provide epilepsy education, please call the Epilepsy Association at 216-579-1330.

2016 Featured Family    11th Annual Winter Walk

2016 Featured Family 11th Annual Winter Walk

Tillman Family—Kaycee Tillman
Nominated by: Allison Hamilton, Kaycee’s Aunt

Our story began after Thanksgiving 2014 when we noticed Kaycee did not know the answer to simple questions and just seemed “out of it”. My husband called and said something is wrong with Kaycee, she didn’t know what a brush was when I asked her to bring it to me. This was the second episode in less than a week, and our pediatrician’s office instructed us to take Kaycee to the ER immediately! They ran tests, but everything came back normal. They told us it was probably a virus and to wait it out.  It took time and persistence to figure out she was having absence seizures. After a month filled with hospital visits, doctor appointments and, seizure after seizure, were finally were able to start her on medication. From there, we began adding new medication after medication to the mix hoping one would work!

In March 2015 things took a turn in the wrong direction. Kaycee had a convulsive seizure called tonic clonic seizure. Close to an hour after the seizures started, it finally began to subside and we were in a helicopter on our way to Nationwide Children’s Hospital in Columbus. This was my worst nightmare and the most helpless I’ve ever felt.

Kaycee came through that night and the seizure didn’t dull her shine. Following this change in seizures, she began having different types of seizures several times per day. The atonic seizures would make her fall with no warning at all including down the flight of stairs in our house several different times.  Her little body was covered in bruises from head to toe.

I admitted to myself these were not going away, so I began researching seizures.  I discovered a term I had never heard before “SUDEP” or sudden unexplained death of an epileptic person.  That’s where that pit in my stomach comes from – the fear of her slipping away from me while she’s sleeping. My research put me in contact with a wonderful network of individuals who are supportive and full of information when needed.

Currently, we still have no answers. While the seizures are not as severe, we can count on them showing up most days. We take it all in stride and try to let Kaycee be as independent.

The fact that my baby has to deal with these health issues is horrible, however, this path has put us in contact with wonderful individuals and organizations. Kaycee was granted a trip for our family to attend Epilepsy Awareness Day at Disneyland. It also allowed us to meet wonderful families with common concerns and gain valuable knowledge at the Epilepsy Expo. We met families with children from all over the epilepsy spectrum.

Since the beginning of our story, Kaycee has started kindergarten and is doing well at her school. They care for her and make sure even if she has a seizure she is able to stay at school for the day if possible. They have thought through all aspects of having her at school and continue to adjust and make necessary arrangements. I am so grateful we were lucky enough to start with such a wonderful and caring team.

In August, we began working to get Kaycee a trained seizure dog and through the generosity of so many of our family, friends and strangers we raised enough money. The outpouring of support was wonderful and more than I could have ever anticipated.

I choose to look at the positives and all the good that has come out of this experience. I will continue to be Kaycee’s biggest fan and fight for whatever she needs while continuing to follow Kaycee’s lead of positivity for her future.

We are proud to be one of this years Featured Families and we hope you’ll support, Kaycee, our family and the Epilepsy Association at the 11th Annual Winter Walk for Epilepsy on January 30!

 

Hope

Mark Johnson is an adult living with epilepsy in Northeast Ohio.  This is his first blog post for the Epilepsy Association.  Mark finds peace and joy in writing poetry and was kind enough to share his words with our readers. Thank you Mark!

Hope

There is still hope for those of us that are very lost.

Wishing, hoping and praying that someday, our paths will surely cross.

Sometimes we may go through very crazy and trying times.

Having that hope can really start to ease your mind.

For some of us, we have demons that are very tough to shake.

Keep hoping and doing the right things, so that chain will start to break.

I have been feeling very hopeful as of late.

Don’t leave it up to anyone else but you, to decide your own very fate.

Hope is here for all of us to understand and feel.

There are times in life when hope is very hard to find.

Please don’t worry too much; it is there for us all of the time.

8/8/15

By Mark Johnson

Mark Photo

 

Never give up!

I have written several postings for the Insights into Epilepsy blog, but it has been a while since my last entry so let me briefly tell you who I am again.  I am 51 years old and I had intractable epilepsy for more than 30 years.   On November 7, 2014 I had surgery and I have been seizure free since.  I was initially diagnosed when I was eight years old.  I was seizure free until I was twenty-one when they re-occurred.  I believe that it was almost thirty years ago today that my seizures returned again.  They were controlled for about seven years and then returned, and this time with varied frequency and intensity, they didn’t stop until I had surgery last November.

About a year ago when I went in to see my neurologist for my regular checkup, he indicated that they had a lot of success with people like myself who had done seizure monitoring without locating a focal point by using depth probes, which allow them to locate seizures that emanate from deeper within the brain.  I met with one of his fellows for what seemed to be the better part of an hour.  After I met with him I talked with my neurologist again.  The monitoring process is known as Stereoelectroencephalography or SEEG.   The process goes like this:  They do surgery to implant the leads in 12 to 14 different locations in the brain depending on the results of any previous testing that was done and the symptoms and type of seizures.  After asking a lot of questions and talking with my family I decided to go forward with the SEEG.  If they were successful in finding the focal point I would then make the decision on whether or not to have the surgery.

They scheduled the SEEG in early September.  I was in the hospital for approximately 10 days and they were able to locate my focal point. As anyone who has been through seizure monitoring knows, it is not a pleasant experience to go through.  This was the third time for me.   They found two focal points.  After asking a lot of questions and weighing the odds, I decided that even at 50 years old I was young enough and the percentages were good enough that I would go ahead and have the surgery.

This was not an easy decision to make and I spent a lot of time thinking about it.  At this point in my life, I had come to terms with my Epilepsy and accepted it as a part of my life.  On November 7, 2014 I had the surgery.  After the surgery, while I was in a skilled nursing facility, I fainted when I went to the bathroom and broke three metatarsals in my foot.  The fainting spells necessitated my staying in the skilled nursing facility longer than originally anticipated.  In early December some swelling, which was normal in a procedure like the one I had, became infected and I ended up back in the hospital.  They opened up the wound and washed out the infection.  The infection required that I be on IV antibiotics for the next ten weeks. I finally went home on January 17, 2015 and I was back to work full time by the beginning of February just in time for Tax Season.

The irony of all this is that I had finally come to terms and accepted Epilepsy as a part of my life and now I am finally seizure free.  If there is a take away from my story it is that you should never lose hope.  It is possible to

come to terms and successfully live with epilepsy and we should never lose hope that we may one day be seizure free. If things remain the same, in May I can start the process of getting my driver’s license again.   Never give up hope!

Mike Wesel, Attorney & CPA

Mike Wesel, Attorney & CPA

Congratulations Mike! You area true inspiration to us all!