Jimmy’s Courageous Battle

It was anything but a normal preschool day for 3-year-old Jimmy, that first time he had a violent seizure. He fell to the ground, injured his head and was transported to the local emergency room in Reno, Nevada. The doctors thought the seizures were due to the injury.

But two weeks later, Jimmy fell again. For four weeks, Jimmy had seizure after seizure, followed by trip after trip to the ER.

“It was so surreal,” says his mother Mary Beth Collins. “Seizures were kidnapping my son.”

His pediatrician decided to refer him to UCSF Benioff Children’s Hospital San Francisco.

“Everyone at the hospital was amazing.” – Mary Beth Collins

“Within an hour of the referral, UCSF sent its own transport team to pick us up,” recalls Mary Beth. “I cannot put into words the feeling of confidence and reassurance we finally had.”

Jimmy was admitted to the Mission Bay Intensive Care Unit. Within hours, his team of neurology specialists diagnosed him with intractable epileptic encephalopathy, a condition that causes five different types of seizures. He underwent full genetic sequencing and a lumbar puncture. But the results revealed no specific genetic cause.

“During the lumbar procedure, one of the hospital’s Child Life Specialists brought in all kinds of toys and an iPad so Jimmy could watch cartoons,” Mary Beth says. “She kept him entertained, showing incredible compassion and concern.”

After Jimmy left the hospital, Mary Beth, like many parents, had to deal with an educational system that doesn’t understand how a disease like epilepsy affects the ability of children to learn and develop normally.

They first had to prove that Jimmy qualified for services – a huge struggle until Karen Mixon-Martin, MS, Educational Liaison for the Marie Wattis School at the hospital, jumped in.

Karen got Jimmy assessed through his school district in record time. She then helped get him enrolled in a special needs Pre-K program.

“We help parents navigate an often complex education system so that their children don’t fall through the cracks,” Karen says. “Mary Beth now has the expertise to be a fierce advocate for her son.”

With the right combination of medications and his ketogenic (low carb/high fat) diet, Jimmy still has seizures – but far fewer. And he’s catching up developmentally. Says his mom: “Recently, he identified the number five when he saw it in an elevator. I almost cried for joy!”