On Christmas Eve, Brittany Merritt rushed her then 7-year-old daughter Alexis Snyder to the emergency room. There, she learned her daughter’s body was rejecting her transplanted heart.
That evening Alexis had been experiencing shortness of breath, but her mother knew something just was “just off.”
At the Johns Hopkins Pediatric Intensive Care Unit, the family learned that Alexis was in acute heart failure.
“I was told I got her to the ER in the nick of time,” Merritt says. “That kind of shook me as a mom—God, if I waited a day. I mean, it was Christmas time.”
Merrit’s daughter received her second heart transplant at 8 years old. She had received her first heart transplant at just 30 days old after being born with a heart defect.
While the second transplant was successful, Alexis suffered damage to her other organs while waiting for the heart. Her kidney function was severely damaged, and she has been dependent on dialysis since January 2023.
Alexis, now 13, is still navigating these health challenges—but she’s not alone, and she shares her story publicly to let other kids like her know that they aren’t alone either.
For kids like her, Alexis says, “Be strong, this won’t last forever,” but it’s OK to cry if you need to.
Alexis is a kidney ambassador with the National Kidney Foundation (NKF), a nonprofit working to improve the lives of people affected by kidney disease.
This June, Alexis visited a camp for children who are on dialysis or have been on dialysis in the past. There, she shared her experience and words of encouragement with the other children.
Alexis has her next speaking engagement at the 2024 Maryland Kidney Walk on Sunday, Oct. 6.
The 2024 Maryland Kidney Walk, an important fundraiser for the organization, will take place at University of Maryland, Baltimore County (UMBC)’s Erickson Field.
The fundraiser helps provide support and treatment for Americans living with chronic kidney disease and funds educational initiatives, research and advocacy. The public can pledge their support or register to walk online.
According to the National Kidney Foundation, tackling kidney disease goes beyond the doctor’s office, with structural inequities complicating treatment.
“There are significant disparities in care for children and adolescents with chronic kidney disease, including access to healthcare, poor housing, reduced health literacy, inequities in access to kidney transplantation and several social determinants including food insecurity and economic insecurity,” says Dr. Cozumel Pruette, a pediatric nephrologist and advisory board member for the NKF serving Maryland and Delaware.
For Alexis’ kidney journey, community support has been vital, Merritt says.
Merritt says her entire life became about taking care of learning for Alexis after her daughter’s second heart transplant. Merrit says that she and her mother took CPR classes, learned how to maintain a ventilator and received basic respiratory training to provide Alexis with the care she needed at home during the height of the COVID-19 pandemic.
“My mom and I basically became nurses,” Merritt says.
Merritt also credited church support and her community staying in touch with being “just what she needed.”
In 2020 during the pandemic, Alexis had a drive-by birthday party which turned into an impromptu parade where she was able to stand through the sunroof and wave as the decorated cars drove through the neighborhood.
When Alexis became dependent on dialysis, Merritt says she and her daughter made the best of it—making friends in the dialysis room.
“She’s the type of kid who finds light in everything,” Merritt says.
Alexis is currently on the transplant list.
Learn more about NKF and kidney disease at kidney.org and find details about this weekend’s Maryland Kidney Walk at kidneywalk.org/Maryland.
Fast Facts About Kidney Disease from the National Kidney Foundation
- Kidney disease is the 10th leading cause of death nationwide, affecting 37 million Americans.
- Today, there are approximately 2,100 Marylanders waiting for life-saving kidney transplants.
- More than 9,800 children and adolescents have kidney failure or end-stage renal disease and rely on dialysis or a kidney transplant to survive.
- The most common causes of kidney disease in children are kidney birth defects, genetic diseases or kidney infection.
- Approximately 90% of Americans with chronic kidney disease don’t know they have it.
