Seize: The Story - Terisa Sitton

I was a day old when I started having seizures. 

I was transferred to Primary Children’s and spent about 5 days there, they took me off the medicine after I stopped having seizures and sent me home. 

I remained seizure free for a long time, until I had a seizure again at almost 9 years old and in my third grade classroom! It was Tonic Clonic. The only thing I remember is waking up in a wheel chair in the school hallway heading to the office. My mom came and got me and we went to the hospital. Once there, they ran tests and made arrangement for me to go see a Neurologist. Over the next two weeks I had two more seizures so they decided to put me on medication. 

For the last 7 years I have continued to have thousands of seizures ranging from auras, absence, partial complex and full complex seizures. I have been going through all the testing to see if I am eligible to have brain surgery. The fact of surgery scares me. I have talked to so many people about it like my family; they really want me to get it to help with my seizures. All the doctors I have talked to says it is a good idea. And my friends are very supportive about this idea with surgery. Also my friends are very supportive with me and my epilepsy, they have always been there for me and helped me through so much. I love them! I am very open about my epilepsy; I tell anyone that I’m with just so I can be safe in case I have a seizure. 

I am constantly fighting the stigma of having epilepsy and I have made it my mission to tell people about it, to help them be more comfortable with people that have seizures. Breaking that stigma is why my family is involved with seizure training and why we are all so open to friends and anybody who wants to know more. 

I may have epilepsy, but epilepsy doesn’t have ME!!!

Seize: The Story - Cole Kellar

My name is Cole. I am 3 years old. I was a healthy little boy saying mama & dada and waving, until 10 months old when I suddenly developed "A-tonic drop seizures" & "Absent Seizures" aka "Petit-Mal"in August 2009. My world suddenly changed as I had 100's of seizures a day. After I started having seizures, my brain couldn't keep up and I was diagnosed with severe brain disorder called "Epileptic Encephalopathy" and started regressing developmentally. I stopped pointing, waving & saying mama & dada. I don't talk anymore & get frustrated so I cry a lot. I am developmentally a 10 month old & a 20 month old motor wise, but I am really 3. I started the Ketogenic Diet in 2010-2011, it helped 75% of my seizures, I was on it for 1 year...but ALL of the seizures came back in FULL FORCE. I've also been diagnosed with "Intractable Epilepsy" meaning that my seizures are being treated, but they aren't stopping. I've been on A LOT of seizures meds, none of them worked...they made my seizures worse. Doctors call me a "complicated" case and don't know how to help me. On February 22, 2011- I flew across the county to the Cleveland Clinic in Ohio & neurologist Dr. Deepak Lachhwani found that my left temporal & occipital lobes are malformed aka "Cortical Dysplasia". They found a 3rd seizure type as well, "Infantile Spasms" aka "West Syndrome" which are HORRIBLE seizures with a poor prognosis on development. On September 1, 2011 I had brain surgery to remove my Left Temporal & Occipital Lobes by the BEST neurosurgeon, Dr. William Bingaman (who has done the MOST pediatric brain surgery's and has NEVER had a fatality, most hospitals have a 1 in 100 deaths from brain surgery). I had 150+ seizures a day for 2 straight years. Since my surgery, my mommy & daddy haven't seen any "S's".  You can  read more about me on my blog www.beatingepilepsy.blogspot.com

Madeline's Steakhouse helps kids with epilepsy!

FOR IMMEDIATE RELEASE

Madeline’s Steakhouse donates to kids!

SALT LAKE CITY, Utah, June 18th, 2013 – Adam and Renee Wheaton, owners of Madeline’s Steakhouse & Grill graciously offer a portion of their proceeds to benefit the EAU’s Camp Neuro Revolution.

Madeline’s said:

“People talk about supporting local business. Well now it is time to walk the talk. Join us this week for dinner with your friends and family. The summer months tend to be a little slower and this is when it is the toughest for us. We are excited to see you. Also, we are going to give a part of every guest check to a local charity "The Epilepsy Association of Utah". Our Daughter Madeline and her friends are headed to camp and they need to raise funds to help with the camp. Please let us know you saw this on Facebook and share it with your friends!”

When:     June 18^th – 22^nd

Where:   Madeline’s Steakhouse & Grill

                  10290 South State Street

Sandy, Utah 84070

ABOUT MADELINE’S STEAKHOUSE & GRILL

Madeline's Steakhouse & Grill is Utah’s Best Casual Steakhouse. We are a casual restaurant with fantastic food, great atmosphere, and excellent service. Come and have a good time and prepare to taste the greatest steak, chicken, and pasta you've ever eaten. We have new budget friendly entrees so come in and try it today. We also have private banquet rooms and full service catering. We host retirement, Christmas, birthday parties and also wedding luncheons and dinners. 

ABOUT THE EPILEPSY ASSOCIATION OF UTAH

Founded in 1973, The Epilepsy Association of Utah is a 501(c)(3) charity dedicated to enhancing the quality of life for all individuals living with Epilepsy and seizure disorders. 1 in 26 people will develop Epilepsy at some time in their lives leading to over 150,000 people in Utah alone. Epilepsy is the 4^th most common neurological disorder in the US after migraine, stroke and Alzheimer’s. The Epilepsy Association of Utah offers a public education program, statewide support groups, personal and professional advocacy, college scholarships, art exhibits, educational conferences, summer camp and more.  Visit http://epilepsyut.org for additional information.

Press Contact:        Lindsey Palmer

Email:                        lindsey@epilepsyut.org

Website:                  www.epilepsyut.org

Seize: The Story - Eli Daniels

Eli Daniels was born on January 23, 2012.  He was born four weeks early at 3 pounds 10 ounces. He was taken to the NICU in Logan, Utah, where he stayed until February 8, 2012 when he was taken to PCMC by ambulance. He stayed in PCMC NICU until mid April when he was allowed to come home. Eli was then diagnosed with Laryngomalacia, a cleft in the soft palate, significant hearing loss and blindness. 

Eli has always been small but defying doctors’ expectations. We have been told on many occasions that he is tougher than he appears especially after his multiple surgeries and hospital visits. After many inconclusive tests to determine what is his underlining condition is, Eli underwent a MRI in October of 2012. The MRI showed Eli suffered a stroke early in pregnancy.  After four months, Eli started having spasms. These were later diagnosed as Infantile Spasms. After trying a couple of steroid treatments, the EEG no longer showed spasm activity. After two months the seizures came back but now it has been determined to be another form a seizures and not infantile spasms.

 While there are no clear answers as to what is causing all of his trials, Eli is a happy, stubborn little boy. He has defied odds in his 16 months and continues to impress everyone he meets. While Eli may still be small, at not quite 15 pounds, he is learning and growing. He leaves a mark on everyone’s heart that he meets. He truly is a “small but mighty” little boy.