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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.

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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…
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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.

Julia with her EA Case Manager, Nicole Richter
Julia with Peter NElson, EA Board of Trustees PResident, and Lacey Wood, Director of Community Programming at EA

Congratulations Julia!

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

Ryan ready to start the Winter Walk!
Ryan and 2016 Winter Walk Featured Family super star, Ella!
Ryan receiving his award at the Epilepsy Association’s Power Lunch. Award presented by Board President, Peter Nelson and CEO, Kelley Needham

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.

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March 26th is Purple Day, Epilepsy Awareness Day

Purple Day is Epilepsy Awareness Day

By: Beth Nuss

When my daughter Taylor was diagnosed with epilepsy I felt like it came out of nowhere. The seizures started subtly and went unnoticed for several months; still we knew something was wrong. Taylor was forgetting her homework, going to bed in her day clothes, and wearing the same outfit two days in a row. None of that would be considered normal behavior for a thirteen-year-old girl. When I spoke to the pediatrician about these occurrences, even she didn’t immediately suspect epilepsy. Even after a battery of tests, including an EEg, her condition couldn’t be labeled as epilepsy because there wasn’t any hard evidence.

 Finally one day we observed a seizure for the first time. I can only describe it as a short period of time where she was unaware of her surroundings followed by lip smacking and picking at her clothes. These seizures became more frequent and more pronounced as time went by. Eventually the evidence made it clear that Taylor had epilepsy. She was treated for the next eight years with many different anti-epileptic drugs, each of them failing after a few months of use, while the seizures became worse and very noticeable. I was fearful that she would get hurt.

 School work became an exhausting chore. Her memory grew increasingly worse as the seizures continued and the mind numbing drugs made her inattentive and tired. The school listened to my concerns and tried to understand but they were not equipped to deal with a child with epilepsy. They had never dealt with it before and were completely unaware when Taylor was seizing in school but I knew it was happening. After seven years of seizing at home sometimes ten to twenty times a week, it’s impossible to think that it never occurred between the hours of 8am and 2pm Monday thru Friday. I would like all teachers to be trained to notice when children in the classroom are behaving strangely, attempt to identify what is happening and report the actions to the child’s parents.

 I feel like there is a general unawareness of what epilepsy is and how it affects patients and their families in our society. Countless times I tried to explain to people who ask, “how’s Taylor doing?”, that the meds aren’t working, she’s still seizing, she has trouble learning, she can’t remember, she’s tired all the time, she doesn’t laugh and smile like she used to, she can’t drive, she can’t swim, etc. etc. etc. It is hard to understand when you don’t live with it daily and have never witnessed a seizure. And that’s one of the reasons I would like to bring more awareness to epilepsy.

 Fortunately Taylor was finally able to have epilepsy surgery and has been seizure free ever since. Her two-year anniversary is coming up on March 26, 2015, on Purple Day. She still takes some medications as a precaution but her activity level, confidence and overall disposition is markedly better. Our family will celebrate Purple Day together at The Harp with the Cleveland Epilepsy Association and we will continue to support the many families in our community struggling to come to terms with the diagnosis of epilepsy and the enormous challenges it brings.

 

 

 

 

 

 

 

 

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Joe’s Story

Joe is a client that sought out services with the Epilepsy Association last year after a lot of encouragement from other people in his life. Joe was struggling being out of work after a stressful departure from his last job due to seizures and anxiety issues. When Joe first started working with a case manager from EA, he struggled with issues on what his next step would be in life. Joe also struggled with relationships and trying to gain a sense of independence. Joe took several positive steps for himself during the next several months by being more open in relationships, seeking out career assistance, and using positive coping skills to manage his anxiety.  Joe participated in the Employment Seminar put on by the Epilepsy Association in March of 2014 to help improve his resume building skills, interviewing skills, and learn more about his rights as a person with epilepsy in the workforce. Today, Joe is employed in a full-time position, living independently, and continuing to find new skills and aptitudes for himself. He is currently enjoying painting and says that it helps him therapeutically by being able to learn a new skill and express himself in a different way.  Joe is just one of the many successes that come out of the Adult Case Management Program at the Epilepsy Association.  He has shown great aptitude and initiative in working through the barriers placed in his life due to his epilepsy.  Joe has worked very hard along with his case manager to make positive change in his life.  Congratulations Joe!

Joe Keep up the great work!

Joe
Keep up the great work!

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A Father Remembers His Son – By Kenneth Lawrence

Lawrence Family Bottom Row: Kenneth and Romena Top Row Left to Right: Kenneth Lawrence, II and Keenan

Lawrence Family
Bottom Row: Kenneth and Romena
Top Row Left to Right: Kenneth Lawrence, II and Keenan

Editor’s note: Several months ago, I had the privilege of meeting Kenneth and Romena Lawrence. The couple recently lost their son Keenan due to epilepsy. The Lawrence’s have chosen to remember Keenan by setting up a memorial fund in his honor Through this loving tribute to their remarkable son, they hope to support other parents raising a child with epilepsy. This month we are sharing Kenneth Lawrence’s tribute to his son Keenan by sharing some of his remembrances.

You asked me if I could give you some information about Keenan. There is so much to share, but I’ll begin Keenan’s story at the age of 11 when he started having seizures.

When Keenan realized what epilepsy was, and that he would live with epilepsy the rest of his life, he got very depressed.  One day he asked me how I would like to be like him.  I responded, “What do you mean?”  He said, “I’m a freak.”  That just hurt to hear, in fact, it wounded me.  Not knowing what to say, I tried to give him some encouraging words.

That night I prayed for God to give me the wisdom and knowledge to let my son know that he was not a freak.  When I woke up the next morning, something told me to go to the computer and Google “Famous People with Epilepsy.”  Hundreds of pictures of famous people popped up.  I was so excited that I woke Keenan up to show him what I had discovered.  That day, I left him on the computer and when I got back four hours later, Keenan was still there.  He told me that he wanted to read about everyone.  I’m sharing this story because after that point, Keenan never looked back.  Everything Keenan attempted, he mastered.

When Keenan was 8 years old, he invented at board game called Dice Cards.  If you would like to see an infomercial on the game, just Google Dice Cards by Kenny Lawrence.  The game is very entertaining.  Please keep in mind he was only 8 years old when he brought this game to the family.

Keenan showed an early interest in electronics.  At age 12, he found the very first video game that we bought one Christmas for Keenan and his older brother.  The game, Sega Genesis, wasn’t working and Keenan told me that he wanted to try and fix it.  I said that it would be good practice for him.  I remember coming home from work and finding Keenan in his room working away.  After about a month, I started to feel sorry for him, and thought maybe I should jump in and help him out.  Then one day, he told me that he fixed that game!  We went upstairs to his room, and sure enough, he had the game working.  We played that game all night long.  I went to school for electronics and was amazed at the troubleshooting techniques Keenan used.  He diagnosed the problem with the broken game as if he were a certified technician.

When Keenan was attempting to get into college, he needed an admissions letter from his doctor.  I was shocked when I got the letter.  It read as if Keenan were mentally retarded.  We never showed Keenan the letter.  Instead, I made an appointment with his doctor to let her know that for the last three years he was an honor roll student.  She had seen Keenan for eight years and did not know what was going on with him.  The doctor agreed to rewrite the admissions letter, and with her more favorable endorsement, Keenan entered college without any restrictions.

Keenan first went to a junior college, which he didn’t like very much.  He kept telling us that he wanted to go to a technical school.  We encouraged him to stay two years in a junior college, and then agreed to send him to ITT Technical College.  This is when Keenan started accelerating academically.  Keenan was on either the dean’s list or the honor roll the entire time he was at ITT.  During his last two years, he tutored many of his classmates who were of different ages and races.

When we lost Keenan this past January, he was just a few months away from graduating with his Bachelor’s Degree in Electronic Engineering.

I’m not sure how we will ever get over losing Keenan so early in his life.  He worked hard, overcame so much, and showed great promise.  To make sense of everything, we called the Epilepsy Association to see how we could help others.  This is why we started the Keenan Lawrence Memorial Fund.  We want to help other parents see the promise their children have too.  When we first learned of Keenan’s epilepsy, we needed to talk with someone who understood how to raise a child who has seizures.  We needed to know what to expect and how to handle the difficult situations that were bound to arise.  After some research, my wife, Romena, and I selected the Epilepsy Association because of their Kids & Family Program.  We understand how this program helps other families like ours.  As a family, we invite you to support all the Keenan’s who were lost too soon because of epilepsy.  For our friends and family who have asked, “what can I do?’ and for everyone who is moved by our story to help, we ask that you consider making a gift to the Keenan Lawrence Memorial Fund.  The Epilepsy Association has created a link so that donations are securely made on-line.  Here is the link to Keenan’s Memorial Fund.  All proceeds will go to the Epilepsy Association in Cleveland, Ohio.