Grace was diagnosed as an infant with a severe form of epilepsy called Dravet Syndrome. Lovely Grace will make you smile and laugh when you meet her. She is such a gem, and quite a good whistler, too. Grace still has seizures, tonic-clonic, on a weekly basis.Her parents, Colleen and David, walked into the first Lily’s Luau in 2009. They came to support epilepsy research. Today, Colleen and David are now copilots of Lily’s Fund, always coming up with the next big idea for us to get the word out.
You will never meet a man who is more committed to the land and the wildlife of Wisconsin than Mike Foy. During the day, Mike works for the DNR as a wildlife biologist. And even after hours, he is doing his part to improve our natural resources….often making trips to talk with farmers, checking deer for chronic wasting disease and making bluebird houses.
Three years ago, Mike began having strong and daily sensations that he describes as “waves in his head.” These episodes often left him exhausted.
For over a year, he heard various hypotheses and went through numerous tests to figure out what was going on. Ultimately he landed with a diagnosis of epilepsy at the age of 54.
After many medications, and trying a special diet for seizures, Mike’s epilepsy is still not controlled. “Compared to others who have uncontrolled generalized seizures, I consider myself fortunate.” He and his wife Carrie are volunteers with Lily’s Luau.
Anna is one of our youngest and most powerful advocates for epilepsy. At 11 years old, she has proven that epilepsy is nothing to be ashamed of. Her classmates know firsthand what its like to have an EEG – Anna taught them in class one day while wearing the ambulatory EEG herself and giving them a Powerpoint presentation. Wow! Her mom, Deb, works epilepsy research into her other jobs by lobbying hard for more attention and more dollars to understand this disease.
When Kristen and Bill’s son, Kaelan, was diagnosed a few years ago with epilepsy, Kristen sought others to commiserate with. As a school psychologist, she knew it would do her good. As a mother, she knew she needed someone to talk to…something to get involved with. Kaelan is a student at West High School and is known in at the luau for his “can do” attitude on helping out. His parents, Kristen and Bill, have become two major helpers in making Lily’s Luau run smoothly every year..
Newscaster Sarah Carlson has decided to put her epilepsy out there for all to see. Diagnosed in 2008, Sarah has been an outspoken advocate for those living with epilepsy, showing people that living with seizures can be done, with dignity, class and beauty. Sarah has been instrumental in promoting Lily’s Fund, as well as serving as emcee at Lily’s Luau. Her new quote: “Bring it on.”
The toughest thing about having epilepsy, says Morgan, is having a social life with the thought of a seizure constantly on his mind. His solution? He thinks to himself, “So what? Could be you.”
Morgan’s tonic clonic seizures started when he was young, but it took many years for the right diagnosis to be made, and the right medicine to work. “Right now I’m seizure free due to the third trial of medication, and thanks to my guardian angel Grandma Doots.”
At age 14 months, a young Carissa caught a bug and was running a low grade fever, an easy enough illness for new parents Patti and Stu to deal with. However, shortly thereafter, she started having a seizure, one that the volunteer EMTs, and hospital ER staff were unable to get under control until a full hour later.
And although her next seizure wouldn’t be until 3 years later, it too was a prolonged one lasting over 45 minutes and triggered by a low fever. But it wasn’t until the third seizure a few months after that, when a diagnosis was made, and thus began this family’s journey into the world of epilepsy.
Today at age 15, Carissa is just starting 10th grade and hasn’t had a seizure for over 2 1/2 years. (Mom Patti knocks wood here). Only recently has she started to feel comfortable talking about her seizures, and has been surprised and thrilled to have met some new peers who have epilepsy.
Carissa’s mom, Patti, has been a strong advocate for her daughter from the start, and has recently gotten involved with Lily’s Fund and in Lily’s Friends (see story below). She was thrilled to learn that her employer and her doctor’s office, Dean Health, had jumped in to become a major sponsor of Lily’s Luau 2013.
This soon-to-be senior at East High School is one amazing young woman. Bailey was diagnosed in third grade with absence seizures, which continue today as well as more severe grand mal seizures. She has yet to find a medication to fully control her epilepsy. However, she not only continues her personal fight with epilepsy, but a public one too.
In March of 2012, she organized Purple Day at East HIgh School and turned the school purple to raise awareness of epilepsy. “I feel like there’s lots of attention out there about cancer, but when it comes to epilepsy, nobody knows much about it and how common it is,” she says.
Bailey has become an outspoken advocate for epilepsy and has raised money for Lily’s Fund. She wants to mentor newly diagnosed kids and teens on what it’s like to have seizures, and someday her dream is to work at UW Hospital. We have no doubt she will accomplish all that and more!
Barb Job Packham
At 16 years old, Barb Job Packham kept her seizure disorder quiet and insisted that her family members not talk about it. She had good reason for the gag order. Her first day in drivers ed, she checked the seizure box “yes,” and was kicked out immediately. And both boyfriends and jobs were lost once her epilepsy was discovered.
But forty five years later, she’s using Lily’s Luau as an opportunity to let people in on her epilepsy. “The wisdom of age has taught me that everybody has something to deal with. I’m blessed because my seizures are controlled. I feel like I owe it to the rest of my fellow epileptics to do whatever I can to make the world not only accept us as we are but help us work toward a cure.”
What has helped Barb the most with her epilepsy? Family. She and her husband, Jerry, now live in a four-generation household. Family time is often spent around water at either the backyard pool or helping with the Mad City Aqua Stars, Madison’s only synchronized swimming team. Daughter Jennylynde is the coach, granddaughters Ana and Grace are competitors, and Barb is the costume designer and seamstress.
It has been 30 years since her last seizure but Barb believes she will be on medication for the rest of her life. “I’m through keeping it quiet and I will do whatever I can to get the word out.”