Skip to main content

Young Advocate, Big Goals: Charlotte’s Story

By The Leukemia & Lymphoma Society | May 25, 2024
Charlotte in 2022 standing with arms crossed

Imagine going to the doctor for a cold only to learn you actually have leukemia. That’s how Charlotte's experience with blood cancer began in 2018.  

“The doctor diagnosed it as strep throat,” Charlotte remembers. When the antibiotics didn’t work, she “went to another doctor who diagnosed it as something else.” 

These incorrect diagnoses left Charlotte’s parents looking for more answers, so they requested a blood test. They were horrified by the results. 

After putting her to bed on the night of the blood test, Charlotte’s mother Natalie realized their pediatrician had tried to call eighteen times in the last two hours. “The pediatrician said over the phone ‘Charlotte has leukemia,’” Natalie recalls. “‘Go to the emergency room immediately.’” 

Because of the nature of her disease, doctors began Charlotte’s treatment the very next morning. She has vivid memories from the five long months she spent in the hospital receiving life-saving care. “I was so sick,” Charlotte explained. “I was nauseous all the time. I hid under blankets and didn’t do anything.” 

It was hard for her family to see her like that, but things started shifting back to normal as her treatment drew to a close. Charlotte and her family were ecstatic when she went into remission. 

But it didn’t last.  

 

Cancer shakes up their lives… again 

 

About a year and a half after she reached remission, Charlotte’s blood counts showed that her leukemia was back, and she needed a bone marrow transplant to survive—but she couldn’t get one where she’d received her earlier cancer care.  

So the family prepared to transition to another hospital equipped to perform Charlotte’s life-saving bone marrow transplant. Time was of the essence. The facility that could perform the donation and transplant was over 1,000 miles away, and every day that went by gave the leukemia more time to take hold in Charlotte’s body.  

“We had to move extremely quickly to Cincinnati Children’s hospital to start the bone marrow transplant,” Charlotte recalls. 

Luckily, Charlotte’s brother, Hank, was a match to be her bone marrow donor. Hank was also a kid, so their parents and healthcare providers talked to him extensively about what it would mean to donate. “I was asked a million times ‘are you sure you want to do this,’” Hank said. His response? “Why wouldn’t I?” He was resolved to help his sister by any means necessary.  

Charlotte feels extremely grateful because her bone marrow transplant was successful and she is in remission again. Now, she and her family work with LLS’s Office of Public Policy to make real, effective change for other kids like her.  

Charlotte with her dad, mom, and brother in 2022

A pediatric cancer advocate is born 

 

“In a perfect world, every hospital would have an expert for everything, every piece of equipment, and every clinical trial that’s needed,” explains Charlotte’s father Jeff.  

But that’s not always the case. The healthcare and resources available for any given patient change drastically based on a patient’s location. Many families must travel across state lines to access the care they need—just like Charlotte.  

When out-of-state care is required, kids who are covered by Medicaid often face bureaucratic impediments that can cause dangerous delays in treatment.  

Congress is considering a bill that can help: The Accelerating Kids’ Access to Care Act (AKACA).  

This groundbreaking legislation would give kids who are covered by Medicaid and who have acute diseases like cancer access to life-saving care—minus the red tape and treatment delays that currently come with seeking out-of-state care. AKACA would also reduce the administrative burden for providers treating kids from out-of-state.  

AKACA will help more kids get the help they need faster, which experts believe will save countless young lives. LLS has been championing the legislation since 2021, and our efforts are paying off. More than 200 organizations endorse the bipartisan bill, which has been a focus of LLS lobbying efforts. The legislation has more than 100 cosponsors between the U.S. House and Senate. 

And Charlotte is determined to see it through. “I just made it my goal that if there was something I could do to make it easier for someone else, I would do it!” She was a powerful voice for the legislation at LLS’s 2023 lobby day where she shared her unique perspective with members of Congress. 

Charlotte’s important role in advocacy has left her feeling empowered and her family beaming with pride.  

“There are few things that could make me more proud than to see what she’s done with this,” Charlotte’s father gushed.  

Hank agrees, “From treatment and beyond, she’s continued to grow and become even more impressive!” 

There’s no doubt Charlotte will change the world.  

 

You, too, can become an advocate like Charlotte.

Join LLS in raising awareness for legislation that saves lives through our Mobile Action Network.