Terminal Epileptic, can relate… personally. Got told I was suppose to be dead ages ago. Too F%$#ing stubborn to die, parents too stubborn to let me die.
I believe I donated when I saw the same add last year. Nice to hear she’s still kicking. I’m fighting with medical insurance red tape right now, so my finances are in question until I know if I can afford my prescription, but if you’ll leave a paypal donate button, I’ll drop a few bucks when I get things sorted out. Might even get a few more donations while you wait on that. Just be sure to include a one click button on your end to disable it if something (technical, legal, or otherwise) goes sideways.
Next time you get a chance to go visit her, give her a hug for me. Let her know even the worst cases can have surprising ends. I wasn’t suppose to see my first birthday… and I’m 34 now, and a special case that has both yielded new data that ended up saving lives and causing fights between professional neurologist and brain surgeons. Then give her daddy a hug, just cause I miss mine. Tell him not to give up on her, even when everyone else has. As baffling as it is, one of the most important things dad ever did for me was ORDER me to breath when my whole system shut down. First time, I was less than a month old, and that’s all it took. Three decades later, a deep male voice ordering me to breath while I code is more effective than the crash cart. The doctors don’t understand it at all, but the techs in Dallas use this information now. It saved an 8 year old boy who’s condition is every bit as bad as mine, save he’s still young enough for a few options I don’t qualify for anymore. Doesn’t matter if it makes sense if it works, right?
I know this all looks like rambling, but I’m trying to offer a little bit of hope for Anastasia, from personal experience. I know our conditions aren’t 1-1 but it’s enough that I really know what she’s going through. Hope, stubborn, bullheaded hope, can achieve some amazing things. This coming from a guy who’s been told how long he has left more often then he’s celebrated his birthday.