What I Told Capitol Hill About My Daughter’s Liver Disease—and Why I’ll Never Stop Speaking Up

Recently, I had the honor of joining the American Liver Foundation on Capitol Hill to advocate for something deeply personal: access, awareness, and protection for families like mine who are impacted by liver disease.

Every year, the Foundation gathers voices from across the country to speak directly to lawmakers about the reality of liver disease, what it looks like, who it affects, and what’s needed to improve lives. This year, I was one of those voices.

My role? To tell Sadie’s story.

Liver Disease Doesn’t Always Look Like You Think

When people hear the words “liver disease,” they often picture adults with unhealthy habits. Few imagine infants. Fewer still imagine my infant, Sadie, born with a rare pediatric liver disease called biliary atresia. It’s a condition that’s often misdiagnosed or diagnosed too late. It has no known cause and no cure. It only has one path to survival: a liver transplant.

That’s what we faced. That’s what we lived through. And that’s what I shared.

I met with the staffers for South Carolina Senators Tim Scott and Lindsey Graham, as well as Congressman Jim Clyburn. While I didn’t speak directly with each representative, I sat across from the people who shape the briefings, who relay our stories, and who, hopefully, help move the needle.

I told them about the million-dollar transplant surgery that saved Sadie’s life. About how grateful I was for our private insurance. And about the many families I’ve met since, who had to start GoFundMes to afford their child’s care. Because they didn’t qualify for Medicaid. Or because their state didn’t expand it. Or because their insurance just didn’t stretch far enough.

I also spoke about access to care. About how no parent should have to fight through paperwork while their child fights to stay alive.

Lifting the Stigma Around Liver Disease

One of the most painful things I heard when people found out about Sadie’s condition was:
“Did you drink while you were pregnant?”

I was the healthiest I’ve ever been. I was carrying twins and doing everything in my power to protect them. But that question revealed something bigger, so many people still hold outdated beliefs about liver disease. They think it’s self-inflicted. That it only affects certain types of people.

But the liver is your body’s largest solid organ. It regulates all the toxins and waste in your body.  And when it stops working, everything is affected.

This is why we need education. Early detection. Less stigma. More support.

A Bill That Could Save Lives: Standing Up for the Ones Who Step Up

While we were on the Hill, we also advocated for a bill to protect living organ donors, those amazing humans who choose to give part of their liver or a kidney to save someone else’s life.

Most people don’t know that your liver regenerates. You can give a portion of it to someone in need, and yours will grow back. One dad I met gave part of his liver to his child. Within a year, his liver had fully regrown, and his child had a second chance at life.

But right now, some living donors risk losing their jobs or health coverage after their donation. This bill aims to protect them. Because no one should be punished for saving a life.

To the Mothers Reading This

If you’re following my story because of Sadie, or because your child is facing something similar, I want you to know that I see you. You are not alone.

And if you’re reading this with a cause in your heart, whether it’s liver disease, maternal health, or something else entirely, I want to encourage you to speak up.

You don’t need a foundation to back you. You can call your representative. You can write an email. You can share your story online or in your local community. Advocacy looks different for everyone, but every voice matters. Whether you voted them in or not, they work for you. They are there to listen.

Every Day, I Think of the Family Who Saved My Daughter

I can’t end this without acknowledging Sadie’s donor family.

Because someone else lost a child… and that decision, made in the hardest moment of their lives, gave our daughter the chance to live. That’s not something I’ll ever take lightly.

I think of them every night when I tuck Sadie in. On every birthday. Every holiday. Every moment we get that they don’t.

That’s why I speak. That’s why I go to Capitol Hill. That’s why I’ll never stop.

Thank you for being here, and for listening.

Oh and if you would like to join me at the next Liver Walk or donate to support this very important cause, click the button below.

With love,
Ellen