Monika’s first son, Henry, was born with total hemimegalencephaly – a rare unilateral brain malformation which caused him to have hundreds of seizures per day shortly after birth. The seizures included infantile spasms, a catastrophic epilepsy which can result in profound intellectual and motor impairment if not stopped early. Despite a cocktail of five anti-epileptic medications, Henry went into status epilepticus at three months old and was put into a coma to stop the infantile spasms and other seizures.
Henry required a modified lateral hemispherotomy at three months old to stop his seizures, which unfortunately returned a year later. Despite a revision surgery, his seizures returned again, requiring a third surgery to convert to a true anatomical hemispherectomy. He has struggled with chronic hydrocephalus caused by the first surgery, required five ventriculoperitoneal shunt surgeries, multiple orthopedic procedures, and other challenges.
Frustrated by the lack of research to help them understand how to help their son, Monika and her husband Brad Jones originally founded The Brain Recovery Project to initiate and fund research to better understand neurorehabilitation after hemispherectomy surgery; however, as an active member of several social media communities for families of children with intractable epilepsy who require brain surgery, she quickly learned how underserved children are after having brain surgery to stop seizures.
At her behest, the board of directors in 2017 agreed to expand the organization’s reach to include all epilepsy surgeries, focusing on helping families understand when it’s time to consider epilepsy surgery, and offering a host of programs post-operatively. In 2022, the organization changed its name to the Pediatric Epilepsy Surgery Alliance.
Monika’s journey from mother to advocate for children with epilepsy is captured in Visions, The Inspirational Journeys of Epilepsy Advocates.