Bryan and Taylor Dennis said they trusted their instincts when they noticed something was wrong with their son, Kaden, shortly after he was born.
At 5 days old, Taylor Dennis, a nurse, observed what she described as unusual behavior.
"Some abnormal movements that kind of looked like an exaggerated startle reflex," she said.
According to the family, doctors initially assured them the movements were normal. In the following months, however, Kaden's condition worsened.
"His seizures had progressed to every 15 minutes over like a 12-hour span, so we ended up taking him to CHOP's emergency department," Taylor Dennis said.
There, testing led to a diagnosis.
"The MRI showed that he has hemimegalencephaly, which is the enlargement of the left side of his brain, along with early myoclonic infantile encephalopathy, which is the type of seizure disorder," she said.
The condition, in which one side of the brain is larger than the other, is extremely rare. Kaden underwent surgery in February at Children's Hospital, and his parents said the procedure stopped his seizures.
As they searched for information about the diagnosis, Kaden's parents said they found limited resources available to families facing similar circumstances.
"When you're doing a lot of research on this type of stuff, there really isn't much out there," Bryan Dennis said. "We started his Instagram page, Walking Beside Kaden, just to give updates, but also to have random people that are searching what he has to know that, like, 'Hey, like, other people are going through the same thing.'"
The family is now organizing Kaden's Walk in November to raise awareness of his condition and bring together supporters who have helped them throughout his treatment.
"And it's just a way to, one, bring all the communities together that have, like, helped supported him and helped us get through this, but not only give some hope to maybe another family that is going through the same type of thing," Bryan Dennis said.
Kaden's parents said his seizures have stopped and that he is meeting developmental milestones. They added that he will require ongoing medical appointments to monitor his condition throughout his life.
Funds raised through Kaden's Walk will benefit a local epilepsy foundation. Click here to learn more.