Journey for Jess, our Rise Above Seizures Walk team, was formed in 2009, two years after Jess Marie lost her battle with epilepsy.
Jess was born in 2004, and had her first generalized tonic clonic seizure at 7 months of age. Her journey with epilepsy progressed, and the seizures were relentless. In her short 3 1/2 years on earth, she developed multiple seizure types, tried over a dozen medications, was on the ketogenic diet, and had two brain surgeries. And on June 15th, 2007 Jess had her final seizure in her sleep, which lead to her death from near SUDEP on June 18th.
Jess was so much more than her epilepsy diagnosis and journey. She was beautiful, sweet, determined, sassy, loving, good natured, mischieveous and stubborn. She loved unconditionally, and taught us all what it means to be a fighter. She revealed to all of us the power of perserverance, love, forgiveness and strength. She loved animals, food, being outside, being held and falling asleep in your arms or on your chest. She gave the best moochies, and head hugs.
If she were here today, she would be so proud of all of those living with epilepsy for being courageous and fighting the fight; she would keep telling her family to not be silent about SUDEP and she would want us all to eat the PB&J, drink the sugary coffee drink, run with your pets, take your mittens off to feel the cold snow, close your eyes to feel the warm spring breeze, and most importantly, live each day with love and hope for tomorrow.
We walk to remember, but more importantly we walk to support others and fight for a cure.