When Amelia was two years old, her world changed as she went into heart failure and was subsequently diagnosed with cardiomyopathy, a heart muscle disease that affects the pumping power of the heart. Given the severity of her heart failure, the only option for Amelia was heart transplantation.

Several months after her diagnosis, Amelia was listed on the heart transplant waiting list. Her mother Ebony recalls thinking, ‘When will she get a new heart? Where will it come from? How long will it be?’ Luckily, a donor heart became available for Amelia, and she underwent transplantation that year.

Image: Amelia during her heart transplantation treatment

Soon after Amelia’s heart transplant, Ebony discovered that her son, Elijah, also had cardiomyopathy. Although Elijah is being closely monitored by the cardiology team, the family faces the uncertainty of not knowing whether he might one day suffer heart failure.

Children like Amelia and Elijah face a lifelong health journey, as heart transplantation unfortunately does not offer a cure for such patients. For this reason, Ebony finds comfort in knowing that new therapies are in the pipeline to give patients more options in the future.

Image: Amelia and Elijah are now doing well 

“It’s good to know that there are people working on things that will help the lives of my kids and other kids around the country,” she said.

Read more about our recent childhood heart disease research.