Epilepsy Awareness Month: Advocating for Awareness and Answers – Interview with Connor of Dare to Dream

Epilepsy Awareness Month: Advocating for Awareness and Answers – Interview with Dare to Dream

Last year during Epilepsy Awareness Month, I interviewed Connor Doran.  Of course, Connor didn’t need any introduction because he KNOWS HOWIE MANDEL!!

Connor during a Kite Flying Performance

Well, that’s not exactly why (but it helps).  Connor first caught America’s (and the world’s) attention during Season 5 of America’s Got Talent with his beautiful kite flying performance. I remember watching the show and seeing Connor for the first time.  His mom was with him as well and they both talked about his having epilepsy and how he became involved with kite flying.

Listening to them and watching his first performance brought tears to my eyes.  The performance was absolutely stunning and they brought awareness of epilepsy in that quick interview to millions of people.

Connor and his mom, Amy, continue to spread epilepsy awareness and education through their Dare to Dream team. I am thrilled to be able to have them participate in the interviews again this year.

The only thing that would make me happier is if they could introduce me to Howie Mandel (I just want to tell him how much my daughter and I enjoyed his Bobby’s World series!).  I know that sounds nutty but, of course, that’s no surprise to faithful readers.

Let’s talk with Connor and Amy:

Robert’s Sister:  Tell us the name, mission and goals of your organization.  

My name is Connor Doran and I run the Dare to Dream team. The Dare to Dream team goes around to different schools all around the country. We educate people about Epilepsy and raise awareness about bullying and what kids should do if they get bullied. We also show kids how to fly indoor kites. We do several demonstrations of indoor kite flying to music. After the demonstration flying we teach all the kids, teachers and facility staff about flying indoor kites.  

Robert’s Sister:  When was your organization founded and what was the catalyst for forming the organization?  

When I was 4 years old I was diagnosed with Epilepsy. All of my life I have been bullied or made fun of because of my Epilepsy Induced Anxiety and OCD. Kids and teachers would imitate seizures and stereotype and other people with Epilepsy. Because of the Anxiety and OCD that I had, kids would laugh at me and take advantage of my emotions just to make me upset. They would also cough on me and my food because they knew I had a fear of germs as well. After being on America’s Got Talent I realized that anyone could achieve anything as long as they set their mind to it. I also realized that I was not the only one who was getting bullied at school. That is why I set up this program to let kids know that they are not the only ones who get bullied and that there are people that kids can go to. I go into kite flying when I was 14 years old and it took away my Anxiety and it gave me strength to get through my experiences with bullying.  I figured if that if kite flying helped me then I should share so I could possibly help other people.  

Robert’s Sister:  What do you see as the greatest need for epilepsy awareness or advocacy and how do you help fulfill that need? 

From a person living with Epilepsy I think that raising awareness about Epilepsy is the greatest need. I have been in and out of hospitals my whole life and the only thing that the doctors could say to me was try this drug and let’s see if it works. I feel that if we raise awareness about Epilepsy we will get the public more educated about Epilepsy, we will teach people about what Epilepsy is and as a result the stereotypes about Epilepsy will go down and doctors will do more research to find more effective treatments and a cure for Epilepsy.  

Connor in Washington, D.C.

Robert’s Sister:  What do you want people to know about epilepsy and the people you are working to help?

I want people to know that there a millions of people who live with Epilepsy every day and that most of us are smart, well-educated people. We do not like the rest of the public stereotyping people who have Epilepsy as being stupid. 

All people need to know seizure first aid and how to recognize a seizure.  That can be difficult as seizures can appear in different ways.  Even repetitive behavior such as opening and closing a gate over and over can mean a person is having a seizure.  People need to be aware that someone may not be “drunk” or under the influence of drugs, but may simply be having a seizure.

Robert’s Sister:  What are some events your organization hosts in order to raise funds and awareness?

We have done fundraising for local Epilepsy foundations when we perform at Kite Festivals around North America. We always try to connect and work with the foundations where we are performing. Inviting them to a festival to share information and awareness allows them to reach more people. 

Robert’s Sister: Tell us about your successes!

In 2010 I told my mom that I wanted to audition for America’s Got Talent. She did not believe me. After pressuring her for about a month she sent in a video of my flying.  About a month later we heard back from the producers of America’s Got Talent saying that they were impressed and asked us to come to the open auditions in Portland, Oregon. After flying in front of the producers in Portland I got a call a week later from the show asking me to come back to Portland and audition in front of the judges. When I stepped out on that stage I was nervous but I told Howie Mandel, Sharon Osborne and Piers Morgan why I fly kites because it takes away my fears about Epilepsy and my experiences with bullying. I also explained how indoor kite flying helps.  I advanced through four rounds and went to the live Semi-Final round in Los Angeles where I placed 12^th out of 90,000 people.  Since then I have received letters from people all over the world about their experiences with Epilepsy. I have become an Epilepsy Advocate for the American Epilepsy Foundation and have traveled across North America performing and talking about Epilepsy and bullying. In 2011, I spoke at the National Walk for Epilepsy at the National Mall in Washington D.C. in front of 7,000 people.

Robert’s Sister:   How has epilepsy and your organization affected your life?

Epilepsy has affected all aspects of my life.  It has affected my life in different ways as I get older. When I was little I didn’t really remember having seizures, but I did remember a lot of medications, and doctors and hospital visits.

When I was 14 and my seizures started again, my social life as a teenager and my wanting to be an independent teenager sort of clashed. It made it difficult for me because when other teens were learning to drive, I had to make the decision not to drive because it would have been dangerous to others as well to me.  To this day, I still do not drive for that same reason.

It also was depressing to me to watch others learning to drive and going through the normal teenage milestones.  As a young adult, it is a lot harder for me to be more independent then others, but I am currently taking steps to become more independent and live with Epilepsy at the same time.

I currently am wearing a Smart Watch Monitor that detects seizures and sends an alert by text message to my friends and family giving them my location by GPS. It also automatically dials my phone to one person on my Smart Monitor list which allows someone to be able to talk to me or for me if I cannot.  It has made a huge difference in my independence as I can travel and be out on my own.  I would like to thank The Chelsea Hutchison Foundation for sponsoring me to get the Smart Monitor.  I was not even aware that there was such a thing available and because of them it has changed my life. I would also like to thank the Smart Monitor Company for their help and sponsorship.

For more information on The Chelsea Hutchison Foundation: http://www.chelseahutchisonfoundation.org/

For information on The Smart Monitor: http://www.smart-monitor.com/smartwatch/success-stories/

 

Connor Kite Flying

Robert’s Sister:  Please tell us what your involvement with your organization means to you.  Has this affected your own personal purpose?

The Dare to Dream Team has worked with many different groups of people around North America.  It is not limited to people that have Epilepsy.  It is about believing in your potential, and your dreams and how to reach them.  Bullying is often done by people that do not believe in their potential. By teaching and talking to people, we not only help the persons that are being bullied, but we also reach the person that may be feeling like they need to bully in order to feel power over another.  Thus, the program has the ability to help all that are involved. The kites themselves work as a way of having the “impossible” become possible right before their eyes. How many people think a kite can fly indoors? It seems impossible and yet, as they hear our story, and see it is indeed possible, it helps people realize they should not give up on things that seem out of reach.     

Robert’s Sister:  Please tell us how we can contact and support your organization. 

You can always go to our website at http://connordoran.com/ and find out what we are doing and our current schedule.  We love to hear from people as well, and you can email us directly at connordorankite@gmail.com  

Robert’s Sister:  Please tell us more about the person (or persons) answering the questions here. 

Connor Doran flew his way to NBC’s America’s Got Talent Top 12 spot on season 5, making him one of the world’s best known kite fliers. Connor auditioned along with 90,000 people and brought indoor kite flying to the world. His skill and love of flying qualified him to the Las Vegas rounds, and he was brought back by Howie Mandel for the Live Wildcard Quarter Finals show, in Los Angeles California.  Connor’s world wide support gave him a spot in the top 24 for the Semi Final round. He then remained in Los Angeles and landed in the top 12 of The America’s Got Talent! 

Now attending South Puget Sound Community College in Olympia Washington, Connor shares his love of kiting with new fliers as well as learning from the masters who have supported him and helped him in his journey. He has developed the Dare to Dream Program that has been shared in venues all over North America inspiring others to believe in themselves, to follow their dreams, and to speak out against bullying.  The Dare to Dream Program has moved people of all ages to become empowered and inspired. Connor also works hard to raise Epilepsy Awareness, and to advocate for epilepsy education. His appearances have including speaking in Washington D.C., full production performances, and performing the Dare to Dream program across North America. For more information on upcoming performance dates and location visit

http://connordoran.com/ or email Connordorankite@gmail.com.

Amy Doran (Connor’s Mom)

With 5 AKA Grand National titles under her wing, Amy’s goal is to share kiting and the joy it brings with people around the world. 

Amy has performed in a wide range of venues which include full production shows to the opening ceremonies of the Macabbi Olympic Games.

Amy has been privileged to work with Revolution Kites to create masterpiece series revolutions kites.  All the work she does is her own custom artwork. Her latest Masterpiece Revolution *SkEyes* was one of the kites featured in Revolution Kites Masterpiece Challenge.

In 2007 she qualified for the American Kite Association National Championships in Ocean Shores, Washington. That is where the *Charlie Chaplin * routine really emerged in the Outdoor Open Individual Ballet.  *Charlie* has now won two national championships.  *Charlie* continues to have fun with crowds all over North America.

Along with her son Connor Doran who made the top 12 on America’s Got Talent Season 5, Amy helped develop the Dare to Dream Team to help raise Epilepsy Awareness and money to support research and support for the National Epilepsy Foundation.

Amy and Connor Doran have spoken to many people about the Dare to Dream concept to motivate others to believe in themselves and strive to be everything they can be.   Amy and Connor speak out against bullying and help others gain a voice to speak out for themselves and others.  The Dare to Dream Program is being presented in venues and schools throughout North America by Amy and Connor Doran and the Dare to Dream Team.

Thanks very much to Connor and Amy for their time and for what they are doing for epilepsy awareness and education.  They have shown the world it is indeed possible to have your dreams come true!

Now, about that introduction to Howie Mandel . . .

What Epilepsy Means to Me: Connor Doran, America’s Got Talent Top 12 Indoor Kite Flier

I usually only catch one or two acts from the show, America’s Got Talent (not because I’m a television snob but because I’m busy watching my DVR which is full of NCIS, Dexter and Modern Family).

You’d think I would watch more of it since I’ve been a Howie Mandel fan since  his “Bobby’s World” days (I told you I wasn’t a television snob) when Rach and I would laugh and I’d try to mimic the Wisconsin accent of his mother (walking around the house saying, “Don'tcha know” in a funny voice always got a giggle from my daughter).

Even though I was a sporadic viewer of AGT, I somehow managed to catch the act of the kid who had been bullied, had epilepsy and did a beautiful act with indoor kite flying.  The kite flying was mesmerizing and this kid’s story was inspirational.  Connor Doran made it to the Top 12 a couple of years ago and continues to inspire with his kite flying act.

I’m very excited and honored that he took time out of his busy schedule to talk with me about his epilepsy.

Please meet Connor:  an America’s Got Talent Top 12 finalist, an Indoor Kite Flier and strong Epilepsy Advocate.

He’s also met Howie Mandel.

“Don’tcha know.”

Robert’s Sister:   When were you first diagnosed with epilepsy?  Was it a lengthy process to get diagnosed?   

 
I was diagnosed at age 4. I started having petit mal seizures just before my 4th birthday. I was blinking a lot, and staring and no one really knew what it was.  I was having 30 – 40 “episodes” a day.   My mom videotaped one of the episodes and took it to my regular doctor.  He sent me for an EEG and I had a seizure during the EEG.

 

For those of you unfamiliar, an Electroencephalography (EEG) is the recording of electrical activity along the scalp. EEG refers to the recording of the brain's spontaneous electrical activity over a short period of time, usually 20–40 minutes.

 

Robert’s Sister:  How did you feel when you were diagnosed?  

 

I was only 4, so I was too young to know what was happening.  I really did not have any feelings about it then. But as I got older, and my seizures came back at age 14, I was really scared, and worried.  I got nervous and depressed, and I started to develop OCD (Obsessive Compulsive Disorder).  

 

Robert’s Sister:  Did your family treat you differently after the diagnosis?  If so, how? 

 

Hi, Amy Doran, Connor’s Mom here.  I would like to answer this one as Connor has no memory of being treated differently by family. 

 

The truth is, his Dad and I worried all the time.  We became concerned about water, stairs, slides, any place where Connor could fall or get hurt.  We were on constant watch.  I think you truly understand what it means to be “on watch” when your child is diagnosed with epilepsy. We struggled to find answers, cures, reasons.  It was really tough. 

 

I am glad Connor has no memory of being treated differently because I suppose that means we did a pretty good job of hiding our own fears.  But it was a big change in all of our lives when Connor was diagnosed with epilepsy.

 

Robert’s Sister:  Did the kids at school treat you differently because you had epilepsy?

 

My family didn’t treat me differently, but my school did.  My peers treated me differently because the epilepsy caused anxiety for me which made me nervous about everything.  (Epilepsy induced anxiety).  The kids took advantage of that and would try to scare me. They made fun of me as well. It made me feel like a target . . the number one person to pick on, and be victimized.  

 

Robert’s Sister:  What treatments have you tried?   What has worked?  What hasn’t worked?  

After I was diagnosed with epilepsy at age 4, the doctors put me on Zarontin. It worked great for four years.   When I was 8, my seizures started up again and the doctors added Zonegran.  That made me sick. I was tired all the time, and having headaches. It also made me sleep walk.  I went off the Zonegran and my doctor added Topamax.  So I was taking Zarontin and Topamax. While it did not make me sick, it was not controlling my seizures. 

 

So I had to go off the Topamax, and they put me on Depakote and Zarontin.  That did not stop the seizures either.  We were getting pretty discouraged at this point. It had been a year and a half of trying new medications with no results. 

 

By this time, my mom and dad decided to take me to OHSU Doernbecher Children’s Hospital in Portland Oregon, to see a specialist named Dr. Roberts.  He recommended that we should try a Vagus Nerve Stimulator (VNS).  He wanted us to go to Mayo Clinic in Rochester, Minnesota, which is a top Neurological Center.  

 

I was only supposed to be there one day for a 24 hour EEG.  Five days later, I was still hooked up to the EEG and was really ready to go home to Oregon. They determined that I was not a good candidate for the Vagus Nerve Stimulator and decided the best treatment was to keep trying new meds.  They prescribed Lamictal on top of the Zarontin.  I had great results and no seizures for four years.

 

When I was 14 years old, the seizures came back, this time with grand mals, and tonic type seizures. 

The doctors raised my amount of meds with no results. Then they added Keppra. That seemed to help for about three months.  

Then the seizures returned.   So it was back to see Dr. Stephen Ireland. He had been treating me for the past eight years and was really patient and understanding.  He did some adjusting of my medication amounts, but then eventually added Clonazepam.

On a side note:

In Oregon, you have to be seizure free for three months before you can drive. I was just at the age to take my permit test and I was really excited about that.  My first attempt at the written test did not go well. My second attempt I missed one question too many to pass.  I was really disappointed, and my mom and I were talking about when I could go back and take the test again.  Later that evening I had a grand mal seizure.  It was then I realized that I was not going to drive. It was too dangerous for me to drive. The medications I was on were making me too sleepy and my focus would not be good.  I was not comprehending all the info I would need to operate a 2000 pound car.  With my seizures coming back, I was concerned I would have a problem while driving.  I did not want to take any risks of hurting anyone else or myself.  It was a tough decision for a 15 year old to make. All my friends were learning to drive and excited about it.  But I made the right decision, and at age 19, I still do not drive. 

I am currently taking four seizure medications: Clonazepam, Zarontin, Keppra and Lamictal as well as Zoloft for anxiety. 

Robert’s Sister:  Do you think the medications affect how you feel?

Yes, the medications add to my anxiety. When I first started Keppra it made me irritable but that has gone away.   I sleep a lot, because many of the meds that I am on make me really tired.  I have been able to overcome some of the tiredness.  One thing I have trouble with is eating. I am not very hungry and I have to be reminded to eat regularly.  That is a side effect of three of the meds I am on.

Robert’s Sister:  Have you done any advocacy work (individually or with an organization) or participated in any research studies?  What made you want to be involved?

For the past two years, I have been performing all over North America.   Before each event or performance I connect with the Epilepsy Foundation in that area and we try to work together to raise awareness and help others connect so they can get the support and help they need.   I have just recently done performances to raise money to support the Sparrow Clubs, the National Epilepsy Foundation, and others.   It’s important to me to stay focused on helping others. It only takes a few words of encouragement to someone to make a difference in their lives.  This past year I have done 24 events so far.  Here are just some of the events I have been honored to be at.

• Keynote Speaker at the National Walk for Epilepsy in Washington DC
• Developed The Dare to Dream Team to raise Epilepsy Awareness and raise money for the Epilepsy Foundation.
• Invited to perform at the Smithsonian Air and Space Museum Washington DC

[Editor’s note: for a full list, please visit Connor’s website.]  

Robert’s Sister:   How has epilepsy affected your life?

Epilepsy has changed my life.  It was not a good situation for me because I had trouble with schoolwork, and I was being bullied.  I had issues with understanding some of the subjects. 

I have developed OCD, and an anxiety disorder, due to having epilepsy.

I thought I was totally alone.  The idea of joining a support group made me feel like I was different.  I didn’t want to be treated differently.  I truly believed that I could accomplish whatever I wanted. 

I was starting to fly kites when I was 14 and realized how helpful it was for my stress and anxiety. 

I used to watch videos of other kite fliers, and performers on different shows.  It was then that I got the idea to try out for America’s Got Talent Season 5. 

 

Robert’s Sister:  What is your favorite memory?  

 

My favorite memory has to be my experience on America’s Got Talent.  The night that I auditioned in Portland Oregon changed my life. I spoke openly about having epilepsy and how kite flying has helped me deal with that.

 

The best way I can share that moment is to actually share the video:    

 

 

 

After that night, I heard from people all over the world. I was shocked and amazed at how many people saw the show.  I received emails, letters and phone calls from so many people that have gone through the same thing I had.   I had no idea there would be such a reaction to what I had talked about on the show.  There were so many people that had never seen indoor kite flying. 

After I went to Las Vegas on the show, I was eliminated.  A couple months later, I got a phone call from my producer on America’s Got Talent. He told me I was being considered as a Wild Card for the live show in Los Angeles.  That was a pretty awesome day for me.   It was not a sure thing, but I was working hard practicing just in case.  The day I got the call to be in Los Angeles in six days was just an incredible feeling. I was nervous, but so excited to be heading to the live quarter finals. 

Here is a video of that show:

America's Got Talent: Wild Card Show

Robert’s Sister:  Do you ever wish you didn’t have epilepsy?

 

I wonder if I would have been different, if I didn’t have epilepsy.  Would I be a driver? Would I have been a science or math genius?  Would I have gone on America’s Got Talent?  

 

Would I have been the person I am today? These are all questions I ask myself.   Epilepsy could have limited my life in a lot of ways.  It certainly has affected my life.  But it has also helped me be a stronger person.   Yes, I wish I did not have it, I wish it did not exist for anyone, but having said that, you have to decide to overcome those challenges.   It’s a choice you have to make to try and find the positive, the possibilities, and the dreams.

 

Robert’s Sister:  What do you want people to know about epilepsy?

 

If you are diagnosed with Epilepsy, remember that you may have epilepsy, but it does not have YOU!

 

You are not alone, and there are many people out there going through the same thing you are. Reach out, and connect with others.  If you are not sure how, email me and I am happy to help you get connected.  Remember I thought I was alone too. 

 

If you don’t have epilepsy, you can still be helpful by knowing what to do if someone has a seizure and you are there.  Don’t be caught unprepared.  You can, and will make a difference in someone’s life by knowing what to do.   1 in 10 people will have a seizure in their lifetime.  There are no rules about who can have a seizure. It can happen at any age, to anyone.  People do not realize how serious epilepsy can be.  Epilepsy Awareness is key!  For more information on what to do if someone has a seizure check out this web page here.  

 

Robert’s Sister:  Is there anything else you want to say? 

 

We have had many incredible opportunities to travel and perform in the past two years.  The Dare to Dream concept is growing and I look forward to teaching others how to deal positively with the challenges life gives us all.  The program inspires people of all ages to be advocates, to speak out about bullying, and to believe in themselves.  If you are interested in having the Dare to Dream program at your event or school, please contact me at connordorankite@gmail.com.  

 

I want to say Thank You to Revolution Kites for all their encouragement and support.  They have made so many things possible for me and I am truly grateful.  Also, the emails and messages that people have sent truly mean a lot to me. It helps to know that you have helped someone else in their journey.  Remember, if you can dream it, you can do it!

 

Robert’s Sister:  Please tell us how we can contact any organizations you support or if you have a website or business.  

 

My website is www.connordoran.com  

 

Twitter: https://twitter.com/ConnorDoranAGT

Revolution Kites website is:  www.revkites.com  

 

Robert’s Sister:  Many thanks to Connor for taking time out of his busy schedule to answer my questions!  (Next time you see Howie, please tell him hi for me.) J  

 

We're in the home stretch!  Each day in November we have a new story about someone affected by epilepsy telling us “What Epilepsy Means to Me.”  Check back tomorrow for our next story!  If you’re interested in telling your own story about epilepsy, please contact me at robertssister@att.net.