Jason’s Camp Camper and Parent Testimonials

MadisonMadison was seven months old when she had her first seizure.  After testing and medications, Madison was diagnosed with Partial Complex seizures of the right temporal lobe.  Her seizures are nocturnal.  She only has them in her sleep.  When Madison was four we had tried many medications without complete seizure control so we began talks to have brain surgery.  A month after turning six years old she had brain surgery to remove the area that was causing seizures.  She went from five a week to one about every six weeks.  Not a complete fix but better than it had been.  Bill and I only told her teachers, family, and close friends that Madison had Epilepsy for the longest time.  It wasn’t because we were ashamed.  It was because we didn’t want people to judge her due to lack of education on the part of others.  As she has gotten older we talk about it more and so does she.  Her friends know now and she is okay with it.  Last summer Dr. Knupp suggested camp.  Madison was so excited.  Mostly because she would get to meet other kids that have Epilepsy, as she knew no one else with it.  She absolutely blossomed at camp and became more independent.  Bill and I talked to her about helping her to raise money to send other kids to camp.  She wanted to do this so others could have fun like she did.  We ordered purple and silver bracelets and purple pins from a fundraising site for her to sell at $5 a piece at a Cheyenne Frontier Days event.  She raised $350 at that event due to the kindness of the volunteers.  She then asked the CFD general committee to match the funds and they did better than that and donated $500.  Madison is so proud of herself for raising funds for scholarships for others and for raising awareness of Epilepsy.  She wants others to know they can lead a normal life like she does.  She does tennis, swims, and does jazz dance lessons.  She camps, rides bikes and roller skates, and rides ATVs (all with helmets, of course).  School academics are difficult at times but she always tries hard.  This January Madison was named a Champion for the Children’s Hospital Colorado for the Children’s Miracle Networks.  She gives interviews and helps with fundraisers thus allowing her to raise more awareness about Epilepsy.

ZethHello! My Name is Zeth. I was diagnosed with epilepsy one week prior to my 13th birthday. I live in northeastern Colorado in a small rural town of only 500 people. There’s not one person I know of in my community that has epilepsy or at least that I am aware of. My family has told me that my Grandpa lived with epilepsy, but never disclosed it to anyone because back in his youth most families kept it hidden from others.
When I first found out that I had epilepsy, I thought I was not going to live long. I worried about not being able to do certain things like play sports that I love or ever being able to drive. My neurologist, Dr. Miller, knowing of my fears told me about the Jason Fleishman camp. I had never been to a camp before. My parents thought going to camp would help me understand my feelings about epilepsy and learn how to deal with living with epilepsy. They signed me up to go for the first time in July of 2010. It was such a great time that I returned in July 2011.
My first year, I was a bit scared to have my parents leave me, but this year, I couldn’t wait for my parents to drop me off and leave! I think sometimes my parents can be over protective of me, so I was delighted to have some freedom.
“Really Mom and Dad, I am going to be okay without you,” I expressed to them.
At the camp in Estes Park, you meet other kids living with epilepsy just like you. While there, you can do many fun activities. My favorite is the zip-line. It is such a thrill to hurl approximately 80 yards screaming across the line. There are other activities like horseback riding, archery, high ropes, and other team activities. During your free time you can play basketball, putt -putt golf, kickball, pool, ping-pong, and card games. It is your time to be yourself, talk about epilepsy with others and meet lifelong friends. As for parents, there is no need to worry. The camp provides each child their own counselor and nurse to oversee their medicine.
I have found out that having epilepsy doesn’t mean you have to stop living or do the things you want to do. Epilepsy is just a condition like having diabetes; you just take your medicine and keep living your life as a normal person. It would be great to see you come next summer. I’ll be there, so make sure to look me up!
– Zeth

 

Cloe

My daughter Chloe and I attended Jason Fleishman summer camp for the very first time in 2009. Chloe has been living with epilepsy since she was 3 1/2. As we have gone through our journey with epilepsy it became important to me to find something for Chloe in which she could relate to others living with epilepsy and develop a greater understanding of her disorder.

As a registered nurse I wanted to donate my time but also have the opportunity to learn more about epilepsy. When I researched epilepsy camps, The Jason Fleishman camp was not only the closest to where we live (only 6 hours away) but I was impressed with the activities and new experiences that camp had to offer Chloe.

Camp turned out to be much more than I ever dreamed for both of us. For Chloe it was an opportunity to try new things and the chance to meet other kids living with epilepsy.  It also was a good opportunity for her to see that she is not alone. I knew that she had had a great time at camp when on the 6 hour drive home she talked the entire time (except the last 20 miles) about camp and the fun that she had there.  She still talks about camp and how excited she is to go back next year.  I can’t remember anything else affecting Chloe the way that camp has. Shortly after we left camp Chloe asked me to get her a medic alert bracelet or necklace (because all of the kids at camp have them). For me it was a turning point. I have always felt that if she had medical ID, her disorder would become very public (which I didn’t know if either on of us was ready for).   Since camp, She has been able to talk openly about epilepsy and give specifics about her seizures. What a feeling of empowerment she has developed. What a feeling of pride I have in her ability to embrace her condition and talk about it.

For me camp was so many things. It allowed me the opportunity to do something that I had never done before.  I enjoy the outdoors but I am not really the “roughing” it type. A shower, hair dryer, and curling iron are pretty important to me. So going to camp was kind of out on a limb for me. The hands on nursing experience allowed me to learn a great deal about epilepsy and seizures as well as the latest treatments. But more valuable than that even was the opportunity to interact with people who live with and are affected by epilepsy every day. I was amazed by the courage and bravery that the kids demonstrated, especially in light of the things that they have had to go through because of their epilepsy. As a parent I took comfort in the fact that even if I had not been at camp with my daughter, I knew she was safe and I had complete confidence that every possible emergency had been thought of and planned for. I was also honored to be a part of an incredible group of individuals who staffed the camp. They not only gave their time to spend 5 days away from their homes and families but were compassionate and caring and gave individual attention to every single camper. I have done a variety of things in my nursing career. Even though it was exhausting, the experience at camp was by far the most fun and rewarding of all!  I am excited to go back next year!

By Janell Porter

 

SirenaMy grammy dropped me off at my first ever over night camp. I was a little scared cause I have never spent the night away from people I know. My mommy asked me when I got back home what I did to make myself feel better the first night alone. I told her, I felt better when I found out I wasn’t sleeping alone and a girl named Summer in my cabin told me stuff to make me feel better. I was crying a bit too but she made me feel better. I don’t know if it was her first time at camp or not. My mommy asked me what my favorite part of camp was. I told her the zip line was so very cool but that my favorite, favorite part was playing cards with my new friend Summer. I really hope she is there next year so I can see her. I told my mommy that I want to go back to camp every year for 20 years it was so much fun. When my mommy asked me what the worse part of camp was, I told her leaving was the worse part.

Sirena Doty
Age 10