In the spring of 2013, we discovered that one component of Dravet’s Syndrome for Charlotte was photo sensitive epilepsy. One of her seizure triggers was photo sensitivity specifically in response to reflective pool water and watching TV shows or movies. It was a very long, scary process that took way too long to figure out. In an older post, I described one of the scariest moments of my life when Charlotte almost drowned while I was holding her in a pool. I know that sounds absolutely crazy, but it happened. It was after that experience that I finally discovered special Zeiss Z1 blue lenses that may help prevent photo sensitive seizures in some circumstances. You can read that older post here.
Pool Water Triggers Seizures
Charlotte is 15 years old now, and still struggles with photo sensitive triggers. However, we learned that her Zeiss Z1 Blue glasses work! It took us a very long time to put our trust in the glasses and actually test them while near a pool. Eventually we emotionally recovered enough (but never completely) from our traumatic pool experiences and let her return to pools. I’m happy to say that in this setting, the glasses perform well. Here is a video of Charlotte, just this past October learning how to swim after many years of not being in a pool. She is wearing the Zeiss Z1 blue glasses. She is so proud of herself, and so are we. Her determination to overcome obstacles never ceases to amaze us.
Video and Movies Trigger Seizures
The glasses do not work for the TV though. Since Charlotte was about 8 years old, she has not watched TV. She simply could not watch shows or movies without having a seizure! She never really minded not watching TV because she did not know what she was missing out on. But as the years went by and she grew more aware, she realized she was missing out on a lot of things. Mostly this related to her wanting to watch Disney movies.
Interestingly, we knew that she could watch still pictures on a TV screen without having a seizure. That meant it was not the actual light from the TV that would trigger seizures, but the rate of frame changes or camera changes that would trigger the seizures. The easiest way to explain this is by thinking about a flipbook cartoon. If you flip the pages fast, it looks like the drawings are actually moving. But if you flip the pages slowly, you see the same images but they are still.
In response to this challenge, my brother Matt, made her the very first movie that she could watch safely for her 9th birthday. He developed a software that makes movies safe for her to watch.
Of course, making one of those seizure safe movies for Charlotte was so laborious that he could only manage about one per year. They became her annual birthday gift. Every year we would revel in her newest movie and consistently had the same discussion. How cool would it be if there was a capability that could convert movies or even just specific scenes into a potentially seizure safe format automatically? Kind of like switching on Closed Captioning or using TTY services. Why not a photosensitive safe TV option? None of us were equipped to develop something like this, and we always came to the same conclusion. We needed someone who could write code for an unique photosensitivity software.
My brother Matt is active duty Air Force and was chatting with one of his coworkers telling him all about this idea. His coworker, Dennis, laughed and questioned why Matt was telling him all this. While the reason for Dennis’ response was not immediately clear to Matt, Dennis revealed the fact that he also has a daughter with photosensitive epilepsy. As if fate had spurred this unlikely conversation between them, Dennis (a computer coder) expressed that he would love to help write the code for a capability like this. What are the chances? It was meant to be!
Photo Sensitive Cinema is Born
Matt and Dennis now have a fully functioning platform that can convert any movie in seconds to a photosensitive safe format. The best part is, through other serendipitous events, they now have a patent pending for utility patent for this photosensitive capability. While It is not yet ready for other users, we hope that it will one day be a mainstream capability available to everyone. In the meantime, we are looking for anyone in the tech or movie industry that would be willing to help further improve this technology and help make it available on a bigger, global scale. Since this is medically related to epilepsy, If there are any research scientists that would be willing to study the epileptic response to this capability, please reach out to us. I would love to hear from anyone else that has struggled with TV triggering seizures so we can stay in touch! My direct email is: ketocookmail at gmail.com