Trever’s Embrace story — Aspirations and courage in the midst of epilepsy
Epilepsy is one of the most common neurological diseases globally, and at Empatica we make it a goal to share stories of Embrace users to help spread epilepsy awareness.
In this Embrace Stories edition, we feature another Epilepsy hero, Trever, who remains positive in the face of his diagnosis.
Trever is a charming and selfless young man whose curiosity about the world around him and desire to help others was evident right from the early age of 3 years old. He was born a healthy child, who suddenly had his first seizure when he was 5. This led to subsequent seizures and years later, a diagnosis of Nocturnal Frontal Lobe Epilepsy caused by a genetic mutation.
His story is told by his mom, Terriann, who had to watch him with eagle eyes, employing all devices possible, from baby monitors to sound monitors, until she found out about the Embrace to help catch his seizures and contact caregivers so that he can receive help faster. Having the Embrace has given them peace of mind that they didn’t have before, especially after it detected one of Trever’s seizures that they would never have known about if the Embrace didn’t alert them.
From the time he was very young my son Trever was the kind of child that stood out in a crowd. What amazed me most about Trever was how perceptive he was about the world around him.
He seemed to have an uncanny ability to soak up and retain information like a sponge. He also had an inborn sense of generosity and was concerned about helping others from a very young age.
When he was 5 he decided on his own to collect donations for Habitat for Humanity. At age 8 he eagerly participated in a Relay for Life Cancer walk, and whenever he saw a Product & News or item that gave some of its profits to charity he would insist on buying it over other items.
One day when Trever was 5 years old I went to check on him as he was napping. I was a little concerned because he had been complaining of headaches on and off for a few weeks, and it was unusual for him to want to nap in the morning.
I walked into his room to find him having a convulsive seizure in his bed. The sheets and blankets were completely covering his head and his whole body was violently shaking. I remember quickly pulling the bedding off of him to find his lips were blue, his eyes rolled back, and foam was coming from his mouth.
At that moment time stood still, and life as we knew it would never be completely the same. As with many people living with epilepsy, there was no quick diagnosis or answers. He had another seizure the very next day in the hospital, but he was otherwise healthy and the tests were normal so we were sent home to “wait and see”.
And now, 12 years after that first seizure I can say with confidence that the worst part of being a parent of a child with epilepsy is indeed the ”waiting and seeing”.
Not knowing when a seizure might happen means watching your child like a hawk for signs that one is imminent. It means listening to every noise he makes that might be from a seizure, jumping up to check on him a dozen times or more at night, and worrying constantly that he will have a seizure and you won’t know or be there to give aid.
Embrace helped us get through a period of intense sleeplessness, anxiety and worry
In late 2016, Trever had a cluster of seizures more violent and intense than any had been up to that point. That day marked the beginning of a difficult journey that included two medication changes and a new neurologist. But two very good things also happened during that time period.
One is that, with the new doctor came new tests and finally a diagnosis. Trever has Nocturnal Frontal Lobe Epilepsy caused by a genetic mutation. His medication regime now has given him good control once again.
“The Embrace is practical for a teenager like him”
The other very good thing that happened is that the Embrace watch by Empatica was released. Having the Embrace watch to help monitor Trever’s seizures has given us peace of mind that was impossible before.
For so long I had wanted a device that could alert me of a seizure, but there was nothing on the market that was practical for a teenager and reliable and accurate at the same time. The Embrace became available at a time when we needed it most, and helped get us through a period of intense sleeplessness, anxiety and worry.
The first time I was alerted to a seizure by Embrace, Trever was taking a brief nap after school and I was downstairs in a part of the house far away from his bedroom. Had I not got the notifications on my phone from Embrace I never would’ve heard or known that he was having a seizure.
Aspirations and courage in the midst of it all
Trever is now 17 years old and he’s still as bright, quirky and unique as that 3 year old who taught himself to read. He enjoys seeking knowledge of all kinds, and owns enough books to fill a small library.
He’s an honor student, the star of his school’s trivia team and hopes to become a writer or journalist, or maybe something else — His interests are so wide and he’s got the talent and the drive to be successful at anything he truly wants.
“Having the Embrace helps me send him off to college and rest assured that I will be alerted in case of anything”
Trever never complains about having epilepsy, and his courage in the face of it leaves me in awe. After one event last year I was on the phone trying to reach his doctor and could hear my husband in the other room telling Trever he had just had another seizure.
His immediate response was “How is Mommy”? With all that he had just gone through, his first though was still to be concerned about me, because he knows how much I worry about him!
In less than 2 years he will be going off to college, and I can honestly say that without the Embrace watch I don’t think I’d be able to handle the idea of him going away on his own. We are truly grateful for this technology. The freedom and peace of mind it has given us, it has changed our lives for the better.