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.
Chastity’s fight started at age 4 October 31st 1990 while getting ready for Halloween.
Chastity had her first grand mall seizure and was rushed to the er. A mothers fear when we was told by Doctors after being admitted to the hospital and lots test my only daughter has epilepsy. As the years went by Chastity’s fight against epilepsy got worst seizures every day all kinds of trail and era meds would not stop the seizures. Lennox-Gastaut Syndrome (LGS) is what we are dealing with. Seizures are hard to control and they will need life-long treatment. The intellectual and behavioral problems add to the complexity of this syndrome and the difficulties in managing life with LGS. In the last few years, several new treatments have emerged. While none are a cure for LGS, Chastity continues her fight against this monster called epilepsy as she has them everyday and watching each seizure as you know killing brain cells each and every time a seizure happens. Chastity a former model, loved to dance and walks in the beach. But that all changed on August 22 2013 Chas had a grand mall seizure and was in a coma 24 hours later due to non stop seizure month after month. Chas remains in a coma multiple operations double cranial to help her but to no luck as seizures continues while in a coma and getting worse. Doctors told me there’s nothing more they can do. I never gave up. Nine months later Chas wakes from coma fully paralyzed from neck down never to dance or walk again. May 2014 I decided to bring her home what ever Gods plain for Chas was going to take place at home where she will be taken care of and loved 24-7. I had to quit my job and become Chastity’s 24hr a day caregiver. Chastity’s having a seizure may seem confused or look like she staring at something that isn’t there. Other seizures can cause her to shake, and become unaware of what’s going on around her. Seizures are classified into two group Generalized seizures affect both sides of the brain Absence seizures, also called petite mall seizures, cause rapid blinking or a few seconds of staring into space. Tonic-clonic seizures, also called grand mal seizures. Chastity’s fight continues. As of date Chastity on 1-24 -2016 has her 30th birthday where she has a grand mall while going up ramp and falls out of wheel chair and all breaking her leg. She is now 24hr bed bound for the next 3 months.
Trysten was born in Houston, Texas, in July 2001. He is 14 years old, attends seventh grade at Odyssey Academy on Galveston Island and lives in Texas City, Texas, with his mother. Trysten’s father lives in Ras Tanura, Saudi Arabia, and visits once a year for a month of summer fun. He hopes to one day travel the world like his father, with the first stop being in Ireland to learn more about his heritage.
Trysten’s story of epilepsy begins with a diagnosis of Grand Mal-Tonic Clonic Seizures and a mild heart condition, Sinus Arrhythmia, at age 12 in August 2013 while visiting family in Huntsville, Texas. After his diagnosis, he found that having epilepsy was not easy to talk about with others which left him feeling alone and excluded. After spending three weeks in the hospital and being told to hide his condition to keep from being held back in life, he and his mother decided it was time to make a difference by raising awareness. It was time to talk about it!
In February 2014, Trysten became one of the co-founders of the Galveston County Epilepsy Awareness Support Group, in partnership with the Epilepsy Foundation Texas, Houston/Dallas-Fort Worth/West Texas. The group has more than 100 members to date. Trysten realized he is not alone, he is 1 in 26.
By October of that same year, at age 13, he established the UTMB Epilepsy Fund at the University of Texas Medical Branch in Galveston, Texas. This fund supports Dr. Todd Masel’s Epilepsy Program in the Department of Neurology. Trysten hopes to someday see Galveston County build a Pediatric Epilepsy Monitoring Unit so that children like him do not have to travel outside the county for this service.
With November being “National Epilepsy Awareness Month”, he worked with the city of Galveston on a 2014 proclamation from the mayor to recognize this special month of awareness each year.
As an advocate of the Epilepsy Foundation Texas – Houston/Dallas-Fort Worth/West Texas, Trysten has delivered 20 presentations since his diagnosis through his Boy Scout Troop 192 – Galveston on First Aid in Epilepsy, with his largest crowd to date being 66 Rotary Club members. He also is the 2015 Galveston County Lemonade Day Business of the Year recipient, donating 100 percent of his $1,000 profit to raise awareness of epilepsy.
Trysten has a heart as big as Texas with a great passion to help others and wants you to know that, regardless of epilepsy, he still enjoys his love of swimming, surfing, hunting, fishing, camping, sailing and many sports activities. This condition will never slow him down as he travels and sails through life!
To learn more about Trysten, please visit his website: www.EpilepsyVoyages.com – an uncharted journey.
Or, follow the support group’s page:www.facebook.com/
Registration site is open! www.FlyMeToTheMoonGala.org
Join us May 7, 2016
Denver Marriot South – Park Meadows
10345 Park Meadows Drive
Lone Tree, CO 80124
Doors open at 5:30. Dinner served at 7:15
Fly Me to the Moon is the 7th Annual Spring Gala event benefiting The Chelsea Hutchison Foundation (“CHF”). This promises to be a fun-filled, step-back-in-time evening with dinner, great friends, wonderful auctions and amazing entertainment. Entertainment will be provided by Derek Evilsizor, a remarkable Frank Sinatra impersonator. This evening will be a celebration of those lives that have been touched by the generous donors of CHF and will take place at The Marriott Denver South in Lone Tree, Colorado.
Cocktail or Vintage Attire.
Pack your bags! One lucky person and their guest will be whisked off immediately following Fly Me to the Moon for an amazing getaway. Luxury car service will pick you up from the Marriott at 10:15 for a Downtown Denver City tour ending with an overnight stay at a 5-star Downtown Denver Hotel. Breakfast will be served in the morning, followed by massages for two. Car service back to your car that following afternoon. Drawing tickets will be available for $ 50/each at the event.
Entertainment: Derek Evilsizor, Frank Sinatra Impersonator
Emcee: Deb Sheppard
Live Auctioneer: Adam Kervil
Valet Parking: Jay’s Valet
Discounted hotel rooms available at the Denver Marriott South by clicking here: www.CHF99Rate.com