Sadness in Our Hearts

It is with great sadness that I write this. Damonito passed away early Friday September 2, 2016. He had been moved into at home Hospice Care in June because it was felt that he had moved into the next phase of Dravet Syndrome. His brain was no longer regulating the things we take for granted, temperature, muscle coordination, sleep, and swallowing. He had been getting worse but he was such a fighter and would often surprise us by following a really bad day with a string of really good days. In fact, when I spent time with him last Sunday, he was up, moving around, playful and happy. We had a great day together. Thursday Nicole noticed a decline she hadn't seen before. I have to say that Nicole has superpowers. She has the ability to see things that are invisible even to the doctors. She called me Thursday to say I needed to come right away and of course, I did. No one, at that point, could have anticipated the outcome. He had become comatose but at one point, he did open his eyes and gave everyone a hug, Nicole knew it was his goodbye. But you know, he had come back from the edge so many times I think we all thought he would find his way back. By midnight, he was struggling to breathe and we decided to move him to the Ryan House in downtown Phoenix. Transport came to get him and Nicole rode with him. He took his last breath around 4am.
I can't begin to tell you how tremendously sad we are. He was the light of our lives. He made us all better people. He was our prince, our beautiful boy, our knight in shining armor. And we will miss him every single day.