LOSTANT — December 2015 brought the birth of two beautiful boys for Matt and Trisha Jamison of Lostant. The twins, Everett and Owen, were born healthy — but within the first year, Everett began having seizures.
After several doctor appointments and tests, it was determined Everett deals with Dravet syndrome.
Trisha explained the disease her baby boy faces and shared her excitement for the inaugural “Seize Hope” fundraiser and awareness walk taking place Saturday, Oct. 13.
“Dravet syndrome is a seizure disorder, a rare form of epilepsy. It affects 1 in 20,000 children. It is a mutation of the SCN1A gene, a sodium channel blocker, and is a form of intractable epilepsy, which means, essentially, it is resistant to medications. DS usually comes out in the first year of life, triggered by illness and/or vaccinations,” Trisha said.
“As the child ages, the syndrome progresses. It causes developmental and cognitive delays.”
Trisha has a theory about the daily issues Everett endures.
“I truly believe the medications also have a hand in delays, and the seizures can occur any time with or without a trigger. Some seizures can last for hours,” she said.
She teared up as she explained how her other son, Owen, is at a stage in his life where she watches him play in the backyard, but without the twin brother he could be playing with, because Everett is inside under her constant supervision due to his medical needs.
Shining light for family
A shining light for the Jamison family is a woman named Erika Fleck, service coordinator for the LaSalle County Epilepsy Foundation of North Central Illinois.
“Erika has been there for us since the day I met her — through a support group. If I am having a bad day or even just need a ride to an appointment, she is there. She is absolutely amazing.”
Fleck explained how she got to the place she is now and why she is so passionate about epilepsy awareness.
“I was 30 years old when I was diagnosed with Dravet,” Fleck said. “I later had brain surgery. I have, thankfully, been symptom-free since, but I knew I had to do something to make people more aware of this rare form of epilepsy, and epilepsy in general.
“I didn’t want people like me to go through what I did — trying to get information and the right diagnosis,” she said. “We have to hold onto hope that something, a cure of sorts, will come out. Knowing about this is half the battle.”
A mother’s message
And as hard as the journey has been for the Jamisons and families like them, Trisha has a message.
“What I want to stress about Everett is that DS does not define him. He is a strong, funny, loving little 2-year-old. He’s smart, he gives the best hugs in the world, and his laugh is super contagious. I don’t want people to feel sorry for him or us. I want people to join our army and cheer him on every day. I want people to hug their loved ones and say ‘I love you’ every day — because we, as a society, take everyday life for granted. Be thankful and be grateful,” she said.
Trisha praised friends and members of the community for the immense help and support her family has received.
“We love our little village and especially the fire department and ambulance. They have been nothing short of amazing for us. They go above and beyond for sure,” she said.
“Erika is amazing, and friends, Pete and Jody Pawlak — who will provide entertainment — and so many others are helping to make this event an awesome one.”
As the inaugural event, the Jamisons and Fleck are thrilled with the outpouring of support they’ve seen already.
“This is the first walk either of us have ever done, so we’re learning as we go. We’re hoping to have all the kinks worked out and get bigger and better every year. But I have to say, we’ve already exceeded expectations. Currently I’m sitting on a list of over 115 registered walkers.
“That’s huge,” Trisha said. “I honestly was just hoping to have at least 50.”