Donation protected
It’s hard to live when you can’t remember your life.
March 20, 2016 – We call it The Event, the day epilepsy erupted in Jan's brain like a volcano blackening the world in clouds of soot, burning the terrain and carving out vital parts of his brain to change our lives forever. To this day we don’t have a reason why this happened. We, along with multiple doctors have formulated theories, like scientists trying to define the Big Bang. We speculate that Jan always had epilepsy in a small way, but something happened in the early morning hours of that spring day that caused it to evolve.
But people live with epilepsy. Right? Oh, if only it was true for us. Jan woke up that fine morning and didn’t know where he was, didn’t know how he got there, didn’t know what these things were around him. We had just taken a week trip to visit Grandpa, his favorite relative, and he couldn’t remember. His last known memory was getting in the car, but he didn’t know where to. We rushed him to the ER when it became apparent that he couldn’t remember anything outside of 30 seconds. We repeated whole conversations 20 times in 15 minutes. My son had become 10 Second Tom from the movie '50 First Dates' overnight. He was 15 years old, so the ER doctor assumed he had taken drugs. ‘It’ll wear off,’ they said. It never wore off. Three days later we went to a different ER, seizures – lots of seizures, 20 to 30 seizures in an hour, every hour, all day long.
(photo from visit with grandpa, that Jan doesn't remember)
We had to pull Jan out of regular school. He was in high school, 10th grade. There would have been no way he could have functioned. A student who couldn’t remember the last five minutes forced to listen to lectures, do homework hours later, change classes with 7 minute gaps between each class. He wouldn’t know if he was coming or going – we had to pull him out.
It has been 2 years, 10 months, and 17 days. 1053 days and Jan hasn’t changed much. With medication he is down to 20 to 30 seizures a day (even the surgeon said ‘Wow’) and just over an hour of working memory. He is 18 now, but can’t remember a day since The Event so he still behaves like a 15 year old. He hasn’t been to regular school. He gets a tutor four days a week so we can abide by child laws; it’s stupid really, a waste of time, but it gets Jan out of the house and able to talk to someone else, even if it is for just an hour. His friends from school have lost touch with him. I don’t blame them. Time moves slower as a teenager, whole lives were lived in the span of a week and my son wasn’t there to participate. He will never go to a high school dance, homecoming football game; he will never get caught smoking behind the bleachers, or have a high school sweetheart. Life is moving on and he isn’t able to witness it. Every day he says ‘I just want my life back.’
(April 25th 2016, first sleep study complete)
Movies like Adam Sandler’s '50 First Date's and 'Momento' have whole new meanings in our house. When this first started in 2016, I couldn’t Google my son’s illness without getting doctors debunking the illness Drew Barrymore’s character had. I cry when Marlin finds Dory in 'Finding Nemo' and it’s not because Nemo is lost; it’s because my son can’t remember—the same way Ellen DeGeneres portrayed how Dory can’t remember. Jan can’t make new skills. He will never drive. He will never achieve his dreams of becoming a chef, an actor, or an animator. If he didn’t know it when he was 15, he will never know it.
Two years can pile up a lot of medical debt. The insurance, through work has covered most of it but, we’ve still had to refinance our house, pile money on credit cards, and get a loan to cover medications, doctor’s visits, sleep studies, WADA tests, CAT scans, DNA testing, and everything else. Right before this happened; my husband had to stop working in order to help his cardiac patient father, which we still do. I couldn’t stop him, we’d been helping my cardiac patient father for ten years, which we also still do, although not as much. It was a blessing in a way, although cash poor, my husband has been able to stay home with Jan, since he can’t be alone, schedule doctor’s appointments, and take him to see the tutor all while I go to work. I have a list of things I don’t buy any more like birthday cake, and holiday presents, razor blades – if I can help it.
We’ve been through three different doctors in 2 years, with no one having any answers as to what was happening to my son. Then this one—this amazing man, Dr. Benbadis—first gave us a conclusive diagnosis: bilateral mesiotemporal epilepsy. Then this wonderful angel of science says, ‘We can help him.’ Those four sweet little words! The doctor says they can stop 80% of the seizures with a right temporal lobectomy, giving Jan a chance to get his life back and reach for his dreams again.
(Jan seeing snow for the first time, again. He hadn't cut his hair since the seizures started, to help him keep track of time, we made him trim it.)
We don’t like to ask for handouts. We raise money on our own over time to pay for the things we need or we go without. But my son NEEDS this surgery. He lives daily, knowing that he’s lost in a fog, with his hands stretched out searching for someone to pull him in a direction, ANY direction, to help. And finally, there’s an answer, there’s someone to help, but we can’t afford this copayment. So, I ask you now, as a mother tired of watching her only child suffer for far too long and not having the means to help him, PLEASE help us now. Please let me finally help my child get what he needs.
All funds raised will go to Jan’s brain surgery and recovery expenses. In the event we get more than we asked for, we’ll pay off the debt from his previous medical expenses, then donate it to help others with epilepsy. With all of my heart, I thank everyone for getting his story out into the world and for every donation towards his recovery.
- Much Love, L of Gray
March 20, 2016 – We call it The Event, the day epilepsy erupted in Jan's brain like a volcano blackening the world in clouds of soot, burning the terrain and carving out vital parts of his brain to change our lives forever. To this day we don’t have a reason why this happened. We, along with multiple doctors have formulated theories, like scientists trying to define the Big Bang. We speculate that Jan always had epilepsy in a small way, but something happened in the early morning hours of that spring day that caused it to evolve.
But people live with epilepsy. Right? Oh, if only it was true for us. Jan woke up that fine morning and didn’t know where he was, didn’t know how he got there, didn’t know what these things were around him. We had just taken a week trip to visit Grandpa, his favorite relative, and he couldn’t remember. His last known memory was getting in the car, but he didn’t know where to. We rushed him to the ER when it became apparent that he couldn’t remember anything outside of 30 seconds. We repeated whole conversations 20 times in 15 minutes. My son had become 10 Second Tom from the movie '50 First Dates' overnight. He was 15 years old, so the ER doctor assumed he had taken drugs. ‘It’ll wear off,’ they said. It never wore off. Three days later we went to a different ER, seizures – lots of seizures, 20 to 30 seizures in an hour, every hour, all day long.
(photo from visit with grandpa, that Jan doesn't remember)We had to pull Jan out of regular school. He was in high school, 10th grade. There would have been no way he could have functioned. A student who couldn’t remember the last five minutes forced to listen to lectures, do homework hours later, change classes with 7 minute gaps between each class. He wouldn’t know if he was coming or going – we had to pull him out.
It has been 2 years, 10 months, and 17 days. 1053 days and Jan hasn’t changed much. With medication he is down to 20 to 30 seizures a day (even the surgeon said ‘Wow’) and just over an hour of working memory. He is 18 now, but can’t remember a day since The Event so he still behaves like a 15 year old. He hasn’t been to regular school. He gets a tutor four days a week so we can abide by child laws; it’s stupid really, a waste of time, but it gets Jan out of the house and able to talk to someone else, even if it is for just an hour. His friends from school have lost touch with him. I don’t blame them. Time moves slower as a teenager, whole lives were lived in the span of a week and my son wasn’t there to participate. He will never go to a high school dance, homecoming football game; he will never get caught smoking behind the bleachers, or have a high school sweetheart. Life is moving on and he isn’t able to witness it. Every day he says ‘I just want my life back.’
(April 25th 2016, first sleep study complete)Movies like Adam Sandler’s '50 First Date's and 'Momento' have whole new meanings in our house. When this first started in 2016, I couldn’t Google my son’s illness without getting doctors debunking the illness Drew Barrymore’s character had. I cry when Marlin finds Dory in 'Finding Nemo' and it’s not because Nemo is lost; it’s because my son can’t remember—the same way Ellen DeGeneres portrayed how Dory can’t remember. Jan can’t make new skills. He will never drive. He will never achieve his dreams of becoming a chef, an actor, or an animator. If he didn’t know it when he was 15, he will never know it.
Two years can pile up a lot of medical debt. The insurance, through work has covered most of it but, we’ve still had to refinance our house, pile money on credit cards, and get a loan to cover medications, doctor’s visits, sleep studies, WADA tests, CAT scans, DNA testing, and everything else. Right before this happened; my husband had to stop working in order to help his cardiac patient father, which we still do. I couldn’t stop him, we’d been helping my cardiac patient father for ten years, which we also still do, although not as much. It was a blessing in a way, although cash poor, my husband has been able to stay home with Jan, since he can’t be alone, schedule doctor’s appointments, and take him to see the tutor all while I go to work. I have a list of things I don’t buy any more like birthday cake, and holiday presents, razor blades – if I can help it.
We’ve been through three different doctors in 2 years, with no one having any answers as to what was happening to my son. Then this one—this amazing man, Dr. Benbadis—first gave us a conclusive diagnosis: bilateral mesiotemporal epilepsy. Then this wonderful angel of science says, ‘We can help him.’ Those four sweet little words! The doctor says they can stop 80% of the seizures with a right temporal lobectomy, giving Jan a chance to get his life back and reach for his dreams again.
(Jan seeing snow for the first time, again. He hadn't cut his hair since the seizures started, to help him keep track of time, we made him trim it.)We don’t like to ask for handouts. We raise money on our own over time to pay for the things we need or we go without. But my son NEEDS this surgery. He lives daily, knowing that he’s lost in a fog, with his hands stretched out searching for someone to pull him in a direction, ANY direction, to help. And finally, there’s an answer, there’s someone to help, but we can’t afford this copayment. So, I ask you now, as a mother tired of watching her only child suffer for far too long and not having the means to help him, PLEASE help us now. Please let me finally help my child get what he needs.
All funds raised will go to Jan’s brain surgery and recovery expenses. In the event we get more than we asked for, we’ll pay off the debt from his previous medical expenses, then donate it to help others with epilepsy. With all of my heart, I thank everyone for getting his story out into the world and for every donation towards his recovery.
- Much Love, L of Gray
Co-organizers (5)
Lisa DeGray
Organizer
Wesley Chapel, FL
Laura Rifkin
Co-organizer
Richard Flint DeGray II
Co-organizer
Kenya Florit
Co-organizer
Pickle Fu
Co-organizer