Meet Kevin: 2021 Family Advocacy Week Champion

Kevin is participating in Speak Now for Kids Family Advocacy Week from June 13-18, 2021. Through this event, Kevin and his family will discuss his health journey, Le Bonheur Children’s Hospital’s role in providing Kevin with necessary health care services, and why the public and our elected officials must invest in the future of patients like him.

At Kevin’s 6-month appointment with his pediatrician, there were a few milestones he hadn't quite met, but the doctors said they would reassess when Kevin was 9 months old. However, before that appointment Kevin was dropped at daycare and a skull fracture sent him to the ER.

A CT scan identified congenital bilateral perisylvian syndrome (CBPS), a rare neurological disease characterized by paralysis of certain facial muscles and epileptic seizures. An MRI and neurologist also identified pachygyria, a developmental condition due to abnormal migration of nerve cells in the developing brain and nervous system.

Kevin sees nine specialists at Le Bonheur Children’s Hospital following a variety of hospital stays, diagnostic studies and surgeries.

“Things are constantly changing,” says Autumn, Kevin’s mother. “New diagnoses, recommendations, and constant changing medication regimens.”

At the forefront of his medical needs are the swallowing issues and behavior management. Kevin processes medicine differently than most so he needs larger doses of some medications and smaller doses of others, making medication management difficult.

The COVID-19 pandemic has stopped or delayed therapies, and the added isolation has been tough for Kevin.

“He’s a very social person and does well with a routine,” says Autumn. “He associates certain activities with certain places which made virtual school difficult.”

Currently, Kevin is 13 years old and stable. He likes playing outside and games on his iPad.

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published this page in Blog 2021-05-27 12:37:30 -0400