My son, Benjamin, had a left functional hemispherectomy at four months old at Denver Children’s Hospital by Dr. Michael Handler. Ben started having seizures and infantile spasms within days of birth. He was diagnosed by EEG and MRI at three weeks of age with cortical dysplasia in the motor cortex of the left hemisphere. Medications were attempted to control his seizures (Phenobarbital, Topamax, Keppra), but were unsuccessful.
Since his surgery in 2008, Ben has been seizure-free and is thriving academically and participating in school activities. He is on the Principal’s Honor Roll, participates in Cross Country running and golf, and is a member of his school’s National Junior Honor Society. Ben receives weekly PT/OT services from an outpatient therapy provider once a week. He does have right-sided hemiplegia and right homonymous hemianopsia as a result of his surgery.
I understand both the medical and emotional challenges families face. When my child was diagnosed, I desperately wanted to connect with someone who had been through a similar experience. Knowing I wasn’t alone gave me the strength to make the most difficult decisions.
Languages spoken: English
