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
Monday, June 24, 2013
Tuesday, June 18, 2013
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.
“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 18th – 22nd
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 4th 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
Monday, June 10, 2013
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.
Monday, June 3, 2013
I have never written publicly about my Epilepsy, so this might be a little rough and raw. Epilepsy has made me who I am today. I know anyone that struggles with disease also battles with that disease defining them. You are forced to live a life within the parameters of your affliction, whether that means not being able to drive, relying on medication which takes away from the person you are, or being isolated within social circles. I used to believe that Epilepsy controlled who I was going to become, what I could become. I went through high school knowing that I would more than likely never be able to drive, that I may never have a family (for the fear of passing on my Epilepsy,) and that my career would more than likely be decided by what medications I was taking and how severe my Epilepsy became. All of adolescence was spent with this mind set, I missed out on a lot of great opportunities because I fed into the belief that "I couldn't" because of my Epilepsy. I stopped dating completely because I didn't believe anyone could ever fully understand what I was going through and also because I didn't want anyone to ever have to "deal" with my Epilepsy, I stopped playing soccer after ten years out of fear, fear that I would seize in the middle of a game and my peers would treat me differently. For 6 years I lived this way, until one day I was sitting in the Primary Children's waiting room (I remember it very specifically) and I looked around me. Every child with Epilepsy there was either confined to a wheel chair, a helmet, or had such severe brain damage they were in a vegetated state barely surviving day to day. At that moment I realized how good I had it, I may never drive, I may never have a family, but I have all the opportunity in the world! All the opportunity to be whatever I want to be! Something so many of these kids would never have the opportunity to experience, choice. They were confined to bodies that void them of so many life choices which we all take for granted on a daily basis. So from that moment forward I never complained about my Epilepsy again, I never resented it, and I used it to fuel a fire which propelled me to fight for those who couldn't fight for themselves.
I continued living life with medication controlled Epilepsy (Depakote, Topomax, Tegretol, and Lamictal.) And by medication controlled I mean four or five seizures a day instead of the fifteen or twenty I was having when they were at their worst. No matter what, I never lost that sense of purpose and determination, that "I will continue to fight because I can!" I had accepted I would have to live life having uncontrolled seizures, but I was still able to LIVE LIFE. That was what mattered. To this day there are still so many who don't realize or understand that mentality, that there are those who never get to live, I mean live in a way where you govern your own life. Unless you have experienced affliction in a way that your basic life functions are stripped from you I don't think you fully can comprehend or appreciate that, I had accepted that was always going to be part of my life. Then out of nowhere (and I mean out of nowhere) they finally found a focal point and surgery became an option. I remember going into the consultation with my mother and Dr. House explaining the risks involved and the possibilities of blood clots forming post op, before he could finish explaining all the possibilities I remember just saying "do it." My mother started crying and Dr. House asked me to take some time considering everything, I told him that it wasn't a choice, I couldn't go through life wondering "what if" I knew I had to try, no matter what the outcome. If there was even the smallest chance that it could get me to the point where I didn't have to live with the side affects of four medications, it would be worth it. So without going into a crazy amount of detail on the surgery, I went in and they forced my body to have grand mal seizures so they could pin point the location, they finally found exactly where the focal point was located, went in and removed it, and stapled me back up. I continued to seize for a year afterwards due to muscle memory, but eventually they subsided and now I have a seizure in my sleep maybe once every six months. Directly after my surgery the hospital approached me and asked if I would like to speak to candidates considering the surgery. I immediately declined, it wasn't for a lack of want or desire, and it's something I believe very few people outside of Epilepsy will ever fully understand. I felt hypocritical, I felt hypocritical because even before the surgery I had been able to live such a "normal" life compared to so many Epileptics. My epilepsy was never visible outside of the times I seized, I saw the way kids with visible side affects of Epilepsy were treated and I never had to experience that, so who was I to speak on behalf of them? But of course life had plans to change my mentality and in a huge way.
I continued to live my life for the past 5 years being grateful for the surgery and the gift I was given, but never fully grasping the opportunity I had been given. Then this past September everything changed. I work at Costco and a year ago was introduced briefly to a co-worker whose son had infantile spasms and was currently dealing with Epilepsy, I told her we should talk sometime if she felt up to it. She thanked me and it was one of those things where life just got in the way and we never addressed it further. In September of this year that little boy left this world, something stirred inside me as soon as I heard, I knew I had to go to his family. As I pulled up to their house two nights after his passing I had no idea what I was going to say, I barely knew this woman, but I knew without a shadow of a doubt this is exactly where I was supposed to be. We walked for over two hours and just talked about her little boy, that conversation will be something I take to my grave but I can tell you I had never felt such a sense of purpose as I did that night. I knew I had been guided to this woman, I knew I had been given Epilepsy for this purpose to help another individual heal. In that moment it all became so crystal clear, this was why I was given the gift of that surgery, because I could relate to the pain of Epilepsy and I could support her in her fight to continue life. They had an open speaker spot for his funeral and I asked if I could please speak, I had never met this boy but he felt like my own brother and I had an overwhelming feeling that I had an opportunity to share a message that might get through to this family in a way that would give them hope and a reason to believe their little boy lived a life of purpose. I didn't write anything down, I walked up to that pulpit and just spoke from my heart, I couldn't tell you what I said, but I can tell you that my words were guided by a purpose and meaning much greater than myself. Since that day that little boy has been my inspiration, he led me to this amazing family that showed me I can make a difference, I can give back, I can use the life I have been given to support others and show them that they can live, that life is beautiful and no affliction ever has to take that away from you. I now have the opportunity through the EAU to pursue my dream of showing those living with Epilepsy that there is support out there. This year I was lucky enough to be part of a cookie fundraiser put on by "Aud Cakes, Costco, and the Park Cafe.) Because of that fundraiser I was able to help give a family hope, to show a family that they aren't alone in their time of suffering and to support the EAU who is doing that for countless of families and individuals on a daily basis.
I don't know where I will be five or ten years from now, but I have purpose like never before. I have a focus in life and I am ready to see where it takes me next, I have been given a second chance at a life that I can make into anything I want, and I can't think of any better use for it than lifting up others and giving that same hope and inspiration that was given to me with my surgery. I still have so much to learn and I am still so far from who I believe I can be as a person, but I have the inspiration now because of a little boy I never even met. There is no doubt in my mind that I was given Epilepsy for a purpose, and if I could go back I would do it one hundred times over. I am epileptic and I am damn proud of it! I let Epilepsy make me not break me, it was a conscious choice and it has filled me with more purpose for this life than I could have ever imagined. I wouldn't be in this position without the love of my family, friends, and that little boy Wyatt Anderson. They have all shaped my life and gotten me where I am now. This is just the beginning and I can't wait to see what's next! In closing there is a quote I would always think of when my Epilepsy was at it's worst and it would fuel me to continue to push forward- “In life there are going to be some things that make it hard to smile. Through all the rain and pain you got to keep your sense of humor and smile for me now. Remember that.” - Tupac Shakur
I discovered how to live life, I discovered the ability to live a full life regardless of your physical or mental situation. My life will never be free of struggle or trial, but I am in complete control of how I respond to those situations. With that knowledge I can enjoy my life no matter what the situation might be. So the greatest barrier I have overcome is the ability to enjoy life to the fullest.