To President-Elect Trump, From the Mother of a Chronically Ill Daughter

Dear President-Elect Trump,

Hi, we’ve not been properly introduced. I’m Darcy Daniels from Massachusetts. Full disclosure, I didn’t vote for you, but I still want you to succeed because you’re my president, and it will be your face that represents me around the world. That’s the way American democracy works, and I’m a big believer in it.

You said in your victory speech on election night that you were going to be a president for all Americans, so I’m going to take you at your word, and I thought I’d write to you about one of your first initiatives.

“Obamacare.”

Or as I like to call it, the Affordable Care Act.

But first, I’d like to introduce you to my daughter, Wendy.

Cute, right?

She was born totally healthy, but she contracted a bacteria called E. coli that did irreversible damage to her body. It resulted in a lot of complications, including multiple organ failure and a kidney transplant. She has spent a lot of time in the hospital, so much time, in fact, that she wrote a story about it that was turned into a cartoon. It’s now being shown to sick and scared kids when they come into the emergency department. She also competes in the American Transplant Games and the World Transplant Games. This girl, she’s a fighter. She’s tough. She gives back to her community. In short, she’s everything we want an American to be.

She is a real beneficiary of the Affordable Care Act. Now I know that you ran on a “repeal and replace” Obamacare platform, so I wanted to turn your attention to some of the features that are really important to people like me — people who have worked long and hard, who have insurance and who pay all the premiums and out-of-pocket expenses.

The first one is the provision that allows kids to stay on their parents’ insurance until they are 26. Now, I know you can understand this. You’ve got kids, and this allows everyone’s kids to go to college if they want to find a career path and still be able to be covered while they are figuring all of that out. This one really is a no-brainer, and I could be wrong, but I feel like most parents like this provision of the Affordable Care Act. We want our kids safe while they’re working to become responsible citizens because responsible citizens pay taxes, and that’s what keeps the government working.

The second is an important one to parents like me who have a kid with chronic illness. This provision is that children under 19 years of age can no longer be classified as having “pre-existing conditions.” This allows me to keep my insurance or change jobs and get new insurance without having to worry whether or not anyone will cover me because my kid happens to go in the hospital a lot, which she does. This is the one that causes me to lose sleep at night because if this goes away, it will be harder and harder for us to get health insurance, and it’s something we will really need.

The third provision is the removal of the cap on the lifetime insurance that companies are willing to pay for. Because here’s the thing, Wendy started early in her life with medical expenses and through no fault of her own. She will hit that lifetime cap way before any of her peers will. Then where will she be? Who will be able to pay for the constant medical care she will need throughout her life?

As a parent of a chronically ill kid, I’m constantly worried — worried she will be sick, worried I won’t be able to take care of all of her needs, worried I will have to get creative with finances so I can pay for her medications and medical supplies that aren’t covered by insurance. I don’t want to worry about health insurance too. I just want to know that I can keep it. I’m totally fine with paying for it; I’m not asking for a hand out. We work hard and know that insurance isn’t cheap.

But please, don’t take these provisions away from the Affordable Care Act, or whatever it is that you’re going to repackage it as when you “repeal and replace.”

You’re in charge of a lot of citizens now, including the vulnerable ones, and there isn’t much more vulnerable in this world than a chronically ill child.

Thanks for listening, Mr. President-Elect.

Sincerely,

Darcy Daniels

Follow this journey on Brave Fragile Warriors.

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