I use my baking skills to raise donations and epilepsy awareness.
It's heart breaking to know at such a young age that having a baby might not happen.
Letter to My Rookie Self
“Epilepsy” is my “Invisible Disability” and it became a part of my life 32 years ago.
I watched my son go from an energetic, gregarious toddler to having over 1,000 seizures in a single day.
My son is now 24 and has had 4 years stolen from his adult life.
One day I woke up and decided I wasn’t going to let epilepsy control my life anymore.
Rob at Epilepsy Awareness Day at Disneyland
Kaitlin at Epilepsy Awareness Day at Disneyland
Jessica at Epilepsy Awareness Day at Disneyland
When I was about 13 months I had a convulsion in which the doctor thought I was going to die.
I am accepting that I have epilepsy, and I want to make a change.
Epilepsy teaches you to be grateful for every good day and also that life is fragile.
I have had epilepsy since birth as part of my syndrome, Schizencephaly.
"Today I have been seizure free since June 10, 1998, and still going strong."
"I’ve been on almost every medicine I know of hoping to find a better treatment and maybe be seizure free someday. "
"Without her epilepsy, she never would have discovered her passion and skills for neuroscience or her passion to help others. Without CURE, she never would have met Dr. Staley, who has her believing she can do this."
"Epilepsy has been a part Kelli's life for as long as she can remember. "
"Being diagnosed with epilepsy changed how she sees the world and sees how people with different challenges get treated by those who do not understand."
"Miriah was diagnosed with epilepsy when she was seven years old, so she has never really known life without epilepsy."
"The condition may have been overlooked during her childhood as the seizures were mild, yet the boundaries they created were not."
Epilepsy is Merciless
Epilepsy is Suffering
Epilepsy is Misleading
Epilepsy is Missing Out
"Her medical diagnosis required that she place her lofty academic goals on the shelf and focus on simply getting well physically."
"Until a cause and cure are found, Emma's family continues to be at the mercy of this devastating disease."
"I finally reached the point when it was time to break through the stigmas and share my experience to provide hope to others."
"I cried when I was told I had epilepsy. I was ashamed for some reason."
"Advocate, educate, and help to seek out a cure. I had to take part in the mission."
The morning after my only child, Matthew, was born, I had a stroke. To save my life, doctors performed emergency brain surgery. I thought my stroke was horrific. However, nothing could have prepared me for the horror I would experience
Epilepsy hasn’t stopped me from smiling, but no one should have to live with epilepsy.
"Epilepsy can affect anyone of any age, and globally, the burden of epilepsy is HUGE."
"I have helped a number of others out to help with their seizure problems but I can’t help myself out."
"I did not let epilepsy define me, I refused to give up, and I hope I helped others along the way."
"The information I received about CURE research is incredible. I believe knowledge is power, and one day there will be a cure for epilepsy."
"I became a burden on the people who loved me, as I was the one who they would be constantly worried about."
"I hope that we will find a cure one day, but in the mean time, we have to help the general public understand epilepsy."
"Jenna passed doing what she loved to do; running. It was her passion."
"We do not live our lives focusing on what he cannot do, but on all of the possibilities. The possibility of a cure."
“I have part of my son; I want all of him.”
"In Chris's memory, and for the 3.4 million Americans affected, please give as generously as you can. With more research towards a cure, we can spare other families the heartache and loss we live with every day."
"Our family is grateful for the opportunity to support CURE and channel our feelings of helplessness into working together for a cure."
"Until more research leads to a significant medical breakthrough, it will be tough for anyone to live well with epilepsy."
"We are thankful for organizations like CURE for focusing on research toward finding a cure for epilepsy. CURE provides us, and generations to come, with hope for a brighter future."