Thriving with Epilepsy: the Benitez-Gonzalez Family
The Benitez-Gonzalez family had no connection to epilepsy until the day it put 16-year-old Miguel in the hospital, and ultimately took his life. Now, just ten months later, his mother Clarissa uses her energy to raise awareness of the rare form of epilepsy that caused her to lose a child. She is Miguel’s voice now, and along with the other members of Team Miguel will be walking in his memory at the upcoming Rise Above Seizures Walk.
Family and friends of Miguel share his story and raise awareness of epilepsy at EFMN's annual Advocacy Day at the Capitol.
Miguel Gonzalez never lived with epilepsy. Instead, his seizures sent him into a coma that lasted nearly two months. He suffered 100+ seizures a day while in the Pediatric Intensive Care Unit at the Children’s Hospital, and for much of that time, nobody knew why.
It started with a sore throat on September 1, 2017, and quickly progressed to a headache, stomach pain, nausea, fever, and a loss of appetite. Miguel’s mother Clarissa brought him to the ER twice that week, both times he was diagnosed with a lymph node infection, given medication, and sent home to rest.
Miguel missed the first day of his junior year at Harding High School. On what should have been his third day, September 7th, things got worse. Clarissa had already scheduled a checkup with Miguel’s doctor for that morning, but at 10 AM he was no longer responsive and an ambulance was called.
“That was the last time Miguel’s eyes opened. I feel like I lost Miguel on that day; the look on his face while walking to the ambulance that morning was not him,” says Clarissa.
Shortly after being admitted to the Children’s Hospital that morning Miguel suffered his first seizure. They ran every possible test, yet still couldn’t confirm the reason for his illness. Eventually, doctors told Clarissa about Febrile Infection-Related Epilepsy Syndrome (FIRES), which they believed were the type of seizures Miguel was having. FIRES is a rare form of epilepsy that occurs in otherwise healthy children and causes nearly continuous seizures that don’t respond to medication.
“For two whole months I believed Miguel would come home eventually. They tried every therapy known to have worked for kids with FIRES in a case or two…but nothing worked… nothing was stopping the seizures,” says Clarissa.
Miguel was never able to go back home. He passed away in the early morning of November 1, with the official cause noted as cardiac arrest from the coma medication he’d been on for the past two months.
Miguel was the fourth of Clarissa’s six children. He had just started his first part-time job, and had dreams of opening his own skate park. The loss was devastating for the family, but Clarissa is determined to honor his memory by helping other families affected by epilepsy in any way she can.
“I need to share Miguel’s story and raise awareness of epilepsy. I’ve attended the Rare Disease Day at the University of Minnesota, EFMN’s Day at the Capitol, and brought Miguel’s story to the State Senate. Miguel’s family and friends walked in the Cinco de Mayo parade to honor his life and raise awareness of the type of epilepsy he had.”
Next up, Clarissa will captain Team Miguel at the Twin Cities Metro Rise Above Seizures Walk in September. There, she will join teams walking for a variety of reasons – one of which is having lost a loved one to epilepsy.
“Forming a walk team to honor a loved one lost to epilepsy takes courage, especially when you lose someone so young and so recent. The walk is a great place for families to connect, and we are honored to have so many teams join us to raise funds for epilepsy awareness and research,” says Rachelle Holm, EFMN Development Director.
“I am mainly looking forward to meeting other families who are affected, making new friends, and continuing to be involved and share Miguel’s story,” says Clarissa. “Raising money is important because research can lead to answers which are important for the people and children affected. “We love and miss Miguel dearly every single day. We are full of questions with no answers.”
Click here to show your support for Team Miguel.