Gift of Love: Parents of Boy Who Died from Amoeba Demand Change

A Tragic Loss and a Call for Change

The grieving parents of a 12-year-old boy who died after contracting Naegleria Fowleri, an amoeba found in Lake Murray, have spoken out publicly for the first time. The family addressed the media, urging state agencies to take immediate action by testing fresh bodies of water and issuing public service announcements. They are also seeking broader policy changes to prevent similar tragedies in the future.

A Family’s Plea for Action

Jaysen Carr's parents, Ebony and Clarence Carr, expressed their deep sorrow and frustration over the lack of awareness and preparedness surrounding this rare but deadly amoeba. They emphasized that had they known about the risks, Jaysen would not have been in the water. “We don’t want his death to be in vain, because had we known he wouldn’t have been in it,” said Ebony Carr.

The family is now working with Midlands attorney and Columbia City Councilman Tyler Bailey, who has been hired to conduct an independent investigation into Jaysen’s death. Bailey highlighted that the investigation will focus on determining where Jaysen contracted the amoeba and advocating for more comprehensive testing of fresh water sources in South Carolina.

Policy Changes Needed

Currently, Naegleria Fowleri is not required to be reported to the South Carolina Department of Health, and the agency does not track infections from this amoeba. Bailey is calling for immediate investigations into all cases of the amoeba and for state agencies to test lakes for its presence. He pointed out that while the South Carolina Department of Environmental Services tests over 100 beaches, there is no funding for similar tests in lakes.

Bailey criticized the lack of action from state agencies, stating that no reports, phone calls, or follow-ups were made after Jaysen’s death. “There should never be a situation where a child loses his life playing in Lake Murray, doing what kids do, and the agencies and departments, the reason why people feel safe, didn’t do anything,” he said.

The Rarity of the Amoeba

In response to the growing concern, the South Carolina Department of Public Health (DPH) stated that infections from Naegleria Fowleri are considered rare. However, Bailey argued that if the amoeba is not required to be reported, how can it be considered rare? “Jaysen was somebody, every one of these kids is somebody, and they all deserve a chance to grow, to live, to become model citizens and do all the dreams that they have in life. But my son isn’t here to experience any of that,” said Clarence Carr.

Calls for Industry Responsibility

Bailey also urged Dominion Energy, which owns the dam and surrounding land at Lake Murray, to issue advisories about the dangers of the amoeba and provide preventative measures for families, especially during warmer months. He is pushing for legislation that would add Naegleria Fowleri to the list of reportable diseases, which would require a report and investigation if someone contracts the infection.

A Community in Grief

The Carr family described Jaysen as a loving, compassionate, and athletic child with a big smile that brought joy to everyone around him. “He truly had the gift of love, compassion, the athleticism and that big smile that everybody loved about him. We are still in shock by how all of this happened,” said Ebony Carr.

Responses from Officials

The South Carolina Department of Public Health responded to WIS, emphasizing that the amoeba is commonly found in warm freshwater across the state but rarely causes illness. They stated that there is no risk of person-to-person transmission and that they provided actionable information to the public to reduce the already very low risk of infection.

Dominion Energy also issued a statement expressing deep sadness over Jaysen’s loss and encouraging people to follow safety guidelines from public health agencies when engaging in recreational water activities.

Looking Ahead

As the Carr family continues to seek justice and change, their story serves as a powerful reminder of the importance of awareness, transparency, and proactive measures in protecting public health. Their call for policy reform and increased testing highlights the need for a more responsive approach to rare but dangerous health threats.