Quotes from the news wire:
When you’re feeling that fear you’re going to lose your child, you have to be thinking what would I want to give him as his mom if this is it? I want him to hear how much we love him, but also oh my God, I have to save him, what’s his oxygen level? Do I need to resuscitate him? Did I give the first dose of rescue medication? it’s an unbelievable amount of trauma and it’s going to happen over and over again, no matter what we do, until we develop this treatment.
Found on CNN 1 year ago
It’s like your power goes off in your house and you have a backup generator, but your backup generator isn’t working so well, we see the disease manifest at moments when Henry’s tank is running low. It could be when he’s too hot, tired from climbing upstairs, or he’s hungry or his brain was working too hard during therapy.
Found on CNN 1 year ago
Henry is the love of our life, he is a beautiful child inside and out. I don’t want to imagine a life without him in it.
Found on CNN 1 year ago
There’s beauty in that, those moments of in between, if we are having a good day or a good hour, and it’s a beautiful sunny day, we’re going to spend it at the beach or lake and be grateful for even one or two hours he doesn’t experience an episode, it’s beautiful and brutal at the same time. Every single thing that Henry does or endures, it feels miraculous and terribly tragic at the same time.
Found on CNN 1 year ago
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