The Jamison Family
“I can’t say enough about the DSCC organization and how amazing it is to have something like this to help you through these hard times.”
— Trisha Jamison
“That’s just what I need.”
Trisha Jamison doesn’t like to sugarcoat things.
Her son’s journey with a rare form of epilepsy has been a hard battle and an emotional roller coaster.
“To watch your small child have a seizure for an hour and be so helpless is the absolute worst feeling in the world,” Trisha said.
Everett Jamison, 3, has Dravet syndrome (DS), which causes frequent and/or prolonged seizures and developmental and cognitive delays. He’s been enrolled with the University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC) for the last two years.
Trisha said Everett’s DSCC Care Coordinator has provided valuable emotional support and resources to navigate the medical, social and financial issues that come with Everett’s condition.
“Sarah Kelly is an amazing person and she has helped us with so much,” Trisha said. “For example, I reached out to Sarah about help getting us a cooling vest for Everett.”
Everett typically didn’t go outside because heat can trigger his seizures. Additionally, one of his medications doesn’t allow his body to sweat, and DS children have a hard time regulating their body temperature.
“Just like that, Sarah was hard at work and got us one, “Trisha said.
“She’s also someone I can vent to and bend her ear. I have emailed her about issues with doctors and she just listens to me, and that’s just what I need.”
With the stress of raising a child with special needs, Trisha said it’s important to have someone on the outside who can listen.
Sarah was also a valuable resource to the Jamisons when they needed to find a local pharmacy to do compounding for one of his medications.
“I can’t say enough about the DSCC organization and how amazing it is to have something like this to help you through these hard times,” Trisha said.
Though many challenges still exist, Trisha said Everett continues to work hard and exceed expectations.
Doctors initially told the Jamisons that Everett wouldn’t walk but with frequent physical therapy, he took steps last fall.
“He is on four meds and has a VNS (vagus nerve stimulation) device. But you know what, that isn’t who he is,” Trisha said. “He is so funny. He is, most of the time, so happy, and he gives the best hugs in the world.”