Despite everything Damonito has been through, the prognosis of his condition, and all the health issues that go along with it, he's in pretty good shape considering the outcomes for most kids with Dravet. Don't get me wrong, it's tough. He's had a rough time of it. It's been hard on everyone but I've learned I have a bunch of fighters in my family.
The past couple of months have been especially challenging because as Damonito goes through puberty, an increase in testosterone levels can cause seizures. Unfortunately, there is no way to decrease testosterone levels in developing boys. Also, there is no way to know what all that testosterone will do in the end. 1/3 of the patients get better, 1/3 stay the same, and 1/3 get worse. As his seizure activity increases and becomes uncontrollable, there is a greater risk of him going into status epilepticus and not recovering. The rescue drug literally becomes life saving. He's got that family fighter in him and he's fighting everyday. It's an amazing thing to see.
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