ORLANDO -- An event months in the making, conceived with the goal of bringing clinicians and specialists together in a national discussion about a deadly brain-eating amoeba, was able to share a joyous story of one of the few people to survive.
Sebastian DeLeon, a South Florida teen, was admitted to Florida Hospital for Children mere weeks ago while vacationing in Orlando with his family. Today he spoke via video about his miraculous recovery and getting back to his normal life.
"It's mixed feelings, because I don't want to miss any more school, and I know I'm going to have to do a lot of work...but at the same time I'm a kid and don't want to go to school," Sebastian said to loud laughter from the audience.
The Amoeba Summit was founded by Steve and Shelly Smelski to bring national attention to the dangers of Naegleria fowleri (N. fowleri) and Primary Amoebic Meningoencephalitis (PAM), which took the life of their young son, Jordan, in 2014. It included presentations by national experts, as well as workgroups in prevention and awareness; early detection and treatment; and research.
The second annual event was hosted and sponsored by Florida Hospital for Children, and presented by the Jordan Smelski Foundation for Amoeba Awareness and the Florida Department of Health in Seminole County, in partnership with the Florida Department of Health in Orange County.
The amoeba is commonly found in warm freshwater and has a 97 percent fatality rate. Sebastian, who is thought to have contracted the amoeba in Broward County, is one of only four people in the country to survive the infection in the past 50 years.
Florida Hospital officials and the Smelskis attributed the successful treatment of Sebastian in part to lessons learned through the partnership.
"The lab technician who was actually able to identify the amoeba attended our PAM summit last year," said Shelly Smelski. "That's indicative of how critically important it is to do these types of summits, and to do these conferences to educate the medical community, because there is so little known and so little data to go by."
Dr. Humberto Liriano, a pediatric intensivist who treated Sebastian, said that while the amoeba is traditionally associated with southern states such as Florida, the summit's importance stretched much wider.
"It's not just in southern states anymore -- it's reaching northern states, as well," he said. "So this summit will hopefully grow and let the whole country and world know about this amoeba."