Ali

He's had four of these surgeries, some more involved than others. The one before this had him in the CICU for three weeks.

We're hopeful that going forwards he'll need fewer and smaller surgeries, but this was not the last time they'll open his chest.

The surgeon who created what we call Ethan's "Picasso heart," shaping 4 chambers from the 2 he was born with, is several states away.

We also regularly see a local cardiologist, and electrophysiologist for his pacemaker, a pediatrician, & immunology for his polysplenia.

We're going to be adding pulmonology to his team after we give him a summer break. The longest he's ever gone between appointments: 5 weeks.

He takes 5 different prescription medications multiple times a day. All of this adds up. None of this would be possible without insurance.

And I want you to go look at that number again. Nearly a quarter million dollars for one surgery. Reinstate lifetime caps and he's out.

He blew past the million dollar mark long ago; I haven't even mentioned the ER trips for sepsis workups every time his temp goes above 100.4

Or the surprise admissions that sometimes follow those ER visits when his body just isn't strong enough to fight a common virus at home.

As long as we have him with us (and I hope with everything in me that it's forever) we will need to pay for expensive medical care.

A lifetime cap on benefits is the same as saying, "Sorry, you're not worth keeping alive anymore. You're just too expensive."

And now this bill wants to take all that and throw it away for the sake of tax cuts for people who don't even need them.

If you call yourselves pro-life, you need to fight for life from beginning to end. That's what Ethan's doing, what we're doing. Join us.