TORRINGTON – Epilepsy is a constant fight for those suffering from the neurological disorder, but one young man doesn’t let it slow him down. Xavier Sanchez of Torrington continues to fight battles with Epilepsy every day.
In April 2017, Xavier was in a physical education class at Torrington’s Lincoln Elementary School. At one point, everything went black.
“I don’t remember that one at all,” Xavier said. “They (other students) were playing a game with a softball and they thought I got a concussion.”
Xavier said some of the other students thought he had been hit in the head with the ball, but nobody could say for sure. Despite not knowing at the time, he had just experienced his first epileptic seizure.
Local doctors began treating Xavier for a concussion, but he experienced a second seizure in May 2017. After his father, Vincent, witnessed him endure a third seizure in July 2017, doctors recommended Xavier go to the Rocky Mountain Children’s Hospital in Denver.
Xavier was diagnosed with epilepsy in August 2017.
Xavier currently experiences an average of two to four seizures per day. He told The Telegram Epilepsy messes with his brain emotionally, mentally and physically. Epilepsy has affected every part of Xavier’s life.
“I don’t feel good for a second and then it happens,” Xavier said. He can remember the onset of the seizures, but he does not remember anything during the episode. He describes feeling a bubbly sensation in his stomach, like what is felt in an airplane flying through turbulent air, before the seizure. The seizure happens, then he comes back.
Xavier said he is sometimes confused and disoriented after coming back from a seizure. He may not know where he is after he comes back and he is often very exhausted.
Different people have different triggers for seizures, but some common triggers are sleep deprivation, heat, fever or illness, dehydration, stress, flashing or bright lights or loud abrupt noises.
People diagnosed with epilepsy suffer from several different types of seizures. Xavier experiences three types of seizures: absence seizures, focal seizures and grand mal or tonic-clonic seizures.
Absence seizures often involve staring spells and are typically brief, usually less than 15 seconds. Focal seizures last longer but are still typically less than one minute. Grand mal or tonic-clonic seizures are the most severe type and often result in loss of consciousness, muscle stiffness and jerking movements. These seizures can last up to five minutes and beyond. A tonic-clonic seizure exceeding five minutes is a medical emergency and requires immediate action.
A grave concern for those who have Epilepsy is the possibility of Sudden Unexpected Death in Epilepsy (SUDEP). SUDEP is the leading cause of death in people with uncontrolled seizures, according to www.epilepsy.com. Each year, one in 1,000 people with Epilepsy die from SUDEP.
Epilepsy cannot be cured, but treatment can make a huge difference. A slew of medications exists to treat epilepsy and seizures. Despite there being a long list of medications, those taking them must be wary of the side effects. Some of the medicines may worsen seizures, cause suicidal thoughts, depression, dizziness or blurred vision.
Xavier and his mother, Holly, have made it their mission to inform and educate the public about epilepsy. Holly is a community ambassador for the Epilepsy Foundation of Colorado. In that capacity, she works to raise awareness about epilepsy and seizures, supports research for new therapies and cures and works actively with local government to raise awareness. Holly is currently working towards proclaiming November as Epilepsy Awareness Month at the state level.
On Oct. 20, Torrington’s City Council proclaimed November as Epilepsy Awareness Month during their regular meeting. Holly and Xavier were integral in establishing the proclamation and have been for the past three years.
“We spoke with the mayor and told him what we were planning, we went to the meeting and explained why it was important to spread awareness,” Holly said.
Recently, Holly and other members of the Epilepsy Foundation have been working to pass a Seizure Safe School bill. This bill would impose requirements on school districts to provide for appropriate training to teachers, principals, counselors, classroom aides, bus drivers and other personnel with direct contact and supervision of students to recognize the signs and symptoms of seizures and administer seizure first aid.
The bill died in committee in March 2020 but will likely be back before the Wyoming legislature again soon.
Holly has also worked locally to provide the Purple Pumpkin Coloring Contest for local kindergarten through fifth graders. Local businesses offer prizes for winners of the contest.
She has worked with Deacon’s restaurant and The Class Act salon to help bring awareness as well. Deacon’s will be selling heart-shaped cookies and The Class Act will be selling ribbons through November. The ribbons will have the names of people affected by Epilepsy written on them and all proceeds from both events will go to the Epilepsy Foundation of Colorado.
Last year, Trail Elementary School hosted a “be the change challenge” where students brought in their spare change and donated the money to the Epilepsy Foundation. The challenge resulted in a donation of about $540. The class who raised the most money was given a pizza party, paid for by the foundation.
The day to wear purple to spread epilepsy awareness in Torrington is November 18. Those interested in supporting the Epilepsy Foundation of Denver can participate in their annual Walk to End Epilepsy. The walk provides attendees the opportunity to learn more about the ailment in a fun and engaging way.
Xavier would like those learning to live with Epilepsy, “don’t be afraid, at some point it, will get easier. As you go, you’ll learn more.”
Visit The Epilepsy Foundation of America’s website to learn about Epilepsy and how to respond to someone who is having a seizure at www.epilepsy.com.
