Please help us keep Des’ree safe

Hi there everyone! As most of you know, our daughter Des’ree has had a significant amount of health issues in her life. We have been so blessed to have so many people hoping for her, praying for her, and sending her healing thoughts. Kyle and I could not be more grateful for all that you have each shared with Des’ree and our family over the years. This year was a very difficult one though. Des’ree was admitted into Cheo eight separate times this cold and flu season for breathing support through basic colds, has developed pneumonias due to choking issues, and all of the normal stuff for her. But this past January brought a whole new terror for us. One evening as I was doing the last check and tuck in of the night, I found Des’ree blue and unresponsive. We have a monitor in the kids room but there was no sound whatsoever of anything. Her guardian angels must have been working overtime that night though because we were able to bring her back before CPR was needed, the ambulance got to our house quickly, and the doctors and nurses in the ER and the PICU were just wonderful. But the problem was that we had no idea how it happened or what caused it. Then it happened again one morning in May. Des’ree was home from school with a fever, but I was only 6 feet away and there was still no sound. Then that evening she had a full seizure in the ER. As of today we have had 4 known seizures and she has been diagnosed with epilepsy. They are starting the anti-seizure meds, which will take a couple of months to get up to the correct amount, and Kyle, myself, and our family will deal with the seizures just like the rest of her problems, as best we can. But our biggest fear is the silence. She throws up, starts seizing while clenching her mouth, and as a result she chokes and stops being able to breath until the seizure is over and someone can clear her airway for her. This means that the first two seizures she had at home there was no one with her to clear her airway and no way for us to know that anything happened. The doctors have told us there is no 100% accurate way to monitor patients for seizures, but new things are being created all the time. The best one I could find was an app for Apple Watches called SeizAlarm. It monitors movement and heart rates, provides alerts to caregivers, and is the most likely thing that we can teach Des’ree to wear. Unfortunately, this will require quite a large expense at the beginning as we don’t have a watch or a modern enough phone that we can sync them together. So a family friend suggested that we try here to get some help. Kyle has had to miss a lot of work between me being in hospital with Des’ree and the other two being sick and not able to go to school, for which his work has been incredibly supportive of him, but we just don’t have the resources for this large of an expense. And because she is so silent through all of it, we are scared that we don’t have the time to save up for it all either. We need to be able to monitor her, because we have just come too close to loosing her again. She is so strong, and thankfully she is oblivious to what this all is, but Kyle and I are exhausted and we are so hopeful that this will help her. If anyone would like to help out with it in any small way, that would be amazing! Please feel free to reach out to us if you have any questions at all and please also continue to send your thoughts and prayers out to her. We have always fought to keep our baby girl alive and we sure aren’t stopping now! So as always, thank you for your support, love and care through all of this. It takes a village to raise a kid but even more so for a child with special needs!