Kelly and Annie Sorenson knew something was different about their son, Boston, shortly after he was born. He was small and having a hard time breathing. But even after he was discharged from the NICU, Kelly and Annie knew that something just wasn’t right.
Boston was having seizures, sometimes as often as every 45 minutes. Doctors then discovered the problem: one side of Boston’s brain had not developed properly, causing him to have multiple seizures every day.
Over the next few months, a cocktail of anti-seizure medications would not stop the electrical storm which slowed his development. At seven months old, he could not sit without assistance and struggled to hold up his head.
Thanks to the clinical team at Children’s Mercy Hospital, he was found to be a candidate for brain surgery to stop his seizures. A functional hemispherectomy – a procedure where part of one side of the brain is removed and the rest is disconnected from the other side – gave his family hope.
About 150 children per year in the U.S. have this or similar hemispheric surgeries. They’re rare and result in irreversible side effects. After surgery, Boston would lose half his vision and would have a very weak hand.
But this is better than a lifetime of daily seizures which can rob a child of speech, movement, and be catastrophic to development.
At the tender age of nine months old, Boston had a functional hemispherectomy which thankfully stopped his seizures.
But then what? How would Boston’s parents learn about therapies which would help his development? Would they be able to advocate for appropriate services for him in school?
Luckily, Boston’s eye doctor told the Sorensons about The Brain Recovery Project and how we help children reach their full potential after brain surgery to stop seizures. The Sorensons turned to our website for critical information and resources. Our guides informed Annie about evidence-based therapies that would help Boston thrive after surgery. The Sorenson are now using our website to navigate the maze of special education after surgery.
Boston is now three years old … walking and talking. And most importantly, he is seizure-free!