Save the Date! Epilepsy Awareness Day at Elitch Gardens will take place on June 3, 2017. Website will be up shortly.
Save the Date! Epilepsy Awareness Day at Elitch Gardens will take place on June 3, 2017. Website will be up shortly.
Join us every Sunday night at 6:30 PM at Turn of the Century Bingo located at 1921 South Havana, Aurora, CO for Chelsea’s Bingo. $2000 in payouts each night ($50-$1000). The concession stand has wonderful, very reasonably priced food, so join us for dinner and some fun! Nightly drawings as well.
Save the Date for The Chelsea Hutchison Foundation’s Casino Royale. Saturday evening, April 22, 2017. Casino games by Colorado Casino Nights and entertainment by Spinphony! You won’t want to miss this wonderful event. More detail to follow soon.
What a wonderful evening. Thank you to all who attended. Here is a link to the Photos. Chelsea Hutchison Foundation has just paid their 92nd grant for a seizure-response dog and has now provided 353 life-saving movement monitors for those in need. Thank you to everyone who makes this possible.
Epilepsy Awareness Day at Elich Gardens, June 4, 2016. $23.99 Admission Tickets includes The Purple Xperiece, #1 Prince Tribute Band in the World and an return admission ticket to be used August 15 – October 16, 2016. Must order tickets by 11:59 PM June 2, 2016 to receive this price and return ticket. Walk up tickets will be $36.99 so be sure to order soon! For more information and to register at www.STOMPOutEpilepsyatElitches.org.
Purchase tickets at www.StompOutEpilepsyatElit
Join us on June 4, 2016 as we celebrate Everyday Heroes and raise epilesy awareness at Elitch Gardens on June 4, 2016. Register online to receive highly discounted admission tickets and wear your best purple. This is not a walk, but a fun day at the park while raising awareness. On this day, we will also hold our First Annual Purple Duck Chase. ANYONE, ANYWHERE can sponsor ducks as they race down the Lazy River.
Walk-up admission will be significantly higher so be sure to use the above website to order your tickets!
Please share this page with anyone you know who may be interested in attending. No limit on numbers – we just want to paint Elitch Gardens purple.
Epilepsy became a part of my life twenty-nine (29) years ago.
This is my story regarding my journey with epilepsy:
Hi, I’m Edward Crane. I’m 58 years old, and for about the first thirty (30) years of my life, I was healthy, active, and on a great career trajectory. I studied engineering in the U.S. Merchant Marine and traveled the world. Then I worked as a field engineer in the insurance industry in New Jersey and New York, and for a decade, everything went well. Suddenly, in “1987”, I experienced my first grand mal seizure and collapsed at a business meeting in Philadelphia. It was the onset of “epilepsy”, which changed my life forever.
I continued working for the next fourteen (14) years, but my seizures which only happened a few times the first year, became more and more frequent. They began to occur monthly, then weekly, then daily over the years – eventually they took control of my life. In August “2001”, I finally had to retire from my 24-year career because of my medical condition. This was a profoundly a very sad moment in my life.
A friend showed me a TV program featuring the nonprofit organization, called: Canine Partners for Life (“CPL”). It detailed the wonderful work that “Assistance Dogs” can do for disabled individuals, like retrieving objects out of a person’s reach, opening and closing doors on command, turning light switches on and off, providing balance and support, providing stability on stairs, helping bed-dependent individuals move, assisting with dressing and undressing, taking purchases and wallets to a cashier, alerting people to imminent seizures and cardiac events, and much more. This got my attention and I contacted “CPL” and arranged an interview.
The process of seeking an assistance dog was then interrupted in December “2002” when I had surgery on the left temporal lobe of my brain to reduce the frequency of my seizures. The procedure helped, but it also impaired my short-term memory. Fewer seizures were a step in the right direction, as a result of the surgery, but life was still a major daily challenge for me and I needed help.
After recovering from surgery in “2003”, I went back to “Canine Partners for Life (CPL)” and they introduced me to a female “black Labrador retriever” who would be my “home companion dog” with the ability to alert me of my oncoming seizures. Amazingly, at our first meeting, she warned me of an “oncoming seizure” about 20 minutes in advance of it’s occurrence. I laid down on the floor and she waited the seizure out by my side. I knew at that moment my life had just changed for the better. It was a new beginning for me. Our relationship as a “team” was truly amazing, life seemed normal again. We were together for about eight (8) years before she passed away in “2011”. Again, my life took a step backwards without my special dog by my side assisting me.
In June of “2012”, I was matched with my current “Assistance Dog”, a “cream Labrador retriever” who warns me of oncoming seizures with complete accuracy and reliability, quickly alerting me and getting me to react. He isn’t satisfied until I lie down so he can place his front legs across my waist, and he won’t let me up until my seizure is entirely over. He gets up and licks my face, signaling that it’s safe for me to slowly return to my feet. Life got back to normal for me again.
We have been together as a team for over three (3) years now and I also frequently lose my balance without warning. But I keep a good grip on the harness that my “dog” wears to provide me the necessary support through these unexpected challenges. This prevents me from falling and spares me many possible injuries and broken bones.
Epilepsy is truly a battle in life, between the seizures, physical injuries, chronic head pain, frustration and depression. I am truly a blesses individual, in that I have family members and friends who have helped me and supported me in so many ways, each and every day – deal with my epilepsy. I am truly grateful to my sister and her hubby, who I live with for being there for me with my epilepsy (May God bless them both). Also, my service dog is my canine partner who is with me, twenty-four (24) hours a day, everywhere I go and provides me all the support that I need. He helps me fight this battle daily and has helped restore a “level of normalcy” in my life – I am truly grateful.
My service dog made such a difference in my life with my epilepsy and the lives of many people that I know, that I founded a non-profit 501(c)(3) company, called “My Assistance Dog Inc.” several years ago. “My Assistance Dog Inc.” is a non-profit company organized and operated exclusively, to spread the word to individuals, the community in general and corporate America, about the need for and the benefit that “Assistance Dogs” provide to “disabled individuals” and their families. We also hope to provide support in as many ways as possible to the existing “Assistance Dog Community” at large.
(NOTE: We do not raise or train assistance dogs.)
Our goal is to educate and spread the word to the disabled community about: how these special dogs can positively change one’s life for the better, promote awareness regarding assistance dogs, spread the word about their abilities and skills, protect and advance our rights with our dogs and celebrate the great work of assistance dogs and the wonderful organizations that raise and train them.
A typical day for me is: I start my day with a one (1) mile walk in our neighborhood with my canine partner. My level of confidence is strong because I no longer have the fear of an oncoming seizure hitting be by surprise. It is a great way to start the day. I then spend the day on the internet and/or Facebook researching and preparing stories to feature regarding assistance dogs, plus answering questions regarding assistance dogs that people submit to us. My canine partner is always at my feet, working, paying attention to me and when ever he warns me of on oncoming seizure, I lay down on the floor and he places his front paws across my knees until the seizure ends. When he gets up, I know that my seizure has passed and I get up and sit down to recover. Many days I also fight a battle with chronic severe head pain and I take the necessary medication, but my canine partner knows my condition and provides me support by staying at my side. I try to focus on him and not the pain and it helps. In the evening I also take that one (1) mile walk again, in our neighborhood with my canine partner and it is truly relaxing for me. I sit down and review what took place in the day, I make some written notes (because of my memory loss) file them and I plan for the next day and the future. I get a lot accomplished most days and I move forward in life.
In my life with epilepsy, I have learned that my family has been there for me and they help me deal with the biggest challenge that I have ever faced in life and I am truly grateful for their love and support. But, it truly is my assistance dog that is responsible for returning a sense
of normalcy in my life and taking away the control that epilepsy had on me and I am truly grateful. This has made a difference for me and it is a true miracle.
1) What is your connection to epilepsy/seizures? Unfortunately, our story goes way back to when I was a child. I had my first seizure when I was two, was lucky enough to outgrow it by the time I was 10. Fast forward 17 years, and my son had his first seizure. He has Doose Syndrome, which is a rare, catastrophic form of epilepsy that is medication resistant, and hard to control. The cause is unknown. He has failed 18 pharmaceuticals, the keto diet, VNS and Charlotte’s Web. He has many seizure types including tonic clonic, atonic, tonic, myoclonic, absence, atypical absence, just to name a few. He is nowhere close to being under control although he is much better from where we started 8 years ago.
2) Tell us a little bit about your journey. 2007 was Tyler’s first tonic clonic seizure. A year later after his seizures increased to 1000’s a day and two neurologists later, he was diagnosed with Doose Syndrome. My “normal developing” boy disappeared before our eyes. The only thing he could do safely was sit on the couch. Someone had to be right next to him at all times to keep him safe. 2009 we started the keto diet. He was on it for 2.5 yrs. We took him off because the seizures came back and he stopped growing. 2010 he had the VNS implanted. The VNS has helped some but only if you catch the seizure in the right moment, it will sometimes stop it completely or lower the duration and strength. 2013 we tried Charlotte’s Web. It worked originally, but they made changes to it and it stopped working for him.
3) What is a typical day like for you? Typical day for Tyler starts out by waking up around 5:00 am because of having a seizure and not going back to sleep. We give him Haleigh’s Hope at 7:30 in the morning and an hour later give him the rest of his meds…a total of 9 pills. He heads to school at 8:30 and needs a break/nap around 9:30 or so. Again, he will have a seizure or two while he is at school. He amazes his teachers and us by getting up and still be smiling and trying his best, even though you know he is absolutely miserable. Another dose of Haleigh’s Hope at 6:00 p.m., with another 11 pills at 7:30p.m. He is in bed by 9:00pm with another seizure an hour later. Next seizure starts around 2:00am.
My day consists of giving medicine, always worrying that he is safe and when the next seizure is going to hit, and “sleeping” with a baby monitor and Sami monitor within ears shot. Tyler makes a slight noise and I am up checking on him. Now, all of this is on a good day, on a bad day, he can have 7 seizures at night (tonic clonic), and absence and myoclonics all day long, to where we say he is either “here” or “not here”.
4) What support do you have?? I have amazing friends that are always there to listen to me, whether it is a hug, lending ear, or bringing dinner over on our bad days. My family is also very supportive. Tyler’s teachers are also amazing to us. And of course, there is Penny. Penny is Tyler’s seizure response service dog.
5) What would you like others to know? I want others to know so much about epilepsy. Just because you can’t see it, doesn’t mean that it isn’t there. The co-morbidities that come along with having epilepsy. Like everyone else, we need so much research done for epilepsy but yet there is no money in the research for it. THAT THERE IS NO CURE. That epilepsy doesn’t affect just the person that has it, it affects everyone around that person.
6) What has or would make a difference for you? The best thing that has happened to me as a parent with a child with epilepsy is Facebook. I realize I am not alone and have others to go to that understand what we go through on a daily basis. The Chelsea Hutchison Foundation is part of that. I love the fact that we can go to the foundation’s page, and post anything, knowing we will not get judged. What do I want in the future? What everyone else wants…seizure freedom for my son and others. And someday, a cure.