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CLOSE Press conference: Teen fights the odds and survives brain-eating amoeba at Florida Hospital. Video by Craig Rubadoux. 
  
 Buy Photo Shiela Black, a laboratory coordinator at Florida Hospital, speaks during the press conference in Orlando on Tuesday, Aug. 23, 2016. (Photo: Craig Rubadoux, FLORIDA TODAY)Buy Photo 
  
 ORLANDO – A 16-year-old South Florida boy has defied long medical odds by becoming only the fourth patient in the United States to survive a battle with brain-eating amoeba. 
  
 Sebastian DeLeon, a camp counselor, contracted the dreaded Naegleria fowleri infection after swimming on private property in Broward County, Florida Department of Health officials believe. 
  
 DeLeon began developing meningitis-like symptoms on Aug. 5 during a family vacation to Orlando — and he soon developed such an intense headache that he could not tolerate people touching him, said Dr. Humberto Liriano, a pediatric intensivist at Florida Hospital for Children. 
  
 DeLeon’s family took him to the Florida Hospital for Children emergency room on Aug. 7, where doctors gave him medications, placed him in a chemically induced coma, and lowered his body temperature during a 72-hour stretch. 
  
 “We woke him up, and we decided to take the breathing tube out. And within hours, he spoke,” Liriano recalled, choking up and struggling to maintain his composure during a Tuesday morning pressconference. 
  
 “Since then, he’s done tremendously well. We are very optimistic. He’s walking. He’s speaking. I saw him this morning. He’s ready to go home,” Liriano said. 
  
 Naegleria fowleri is a microscopic amoeba that is commonly found in warm freshwater lakes, rivers and streams. If the amoeba enters the body through the nose, it can cause an extremely rare and devastating infection of the brain, said Dr. Rajan Wadhawan, the hospital’s chief medical officer. 
  
 “In the past 50 years, only four people in the United States have been reported to have survived out of the 138 cases reported, giving it almost a 97 percent mortality rate,” Wadhawan said. 
  
 Buy Photo Press conference Tuesday afternoon at Florida Hospital in Orlando after Sebastian DeLeon age 16 defies odds, and survives Naegleria Fowleri commonly known as brain-eating amoeba found in warm water and has a fatality rate of more than 97 percent. (Photo: Craig Rubadoux/ FLORIDA TODAY ) 
  
 In August 2011, 16-year-old Astronaut High student Courtney Nash of Mims died of the amoebic infection after swimming in the St. Johns River near the Brevard-Volusia county line. 
  
 Prior to Nash’s death, Brevard County’s most recent Naegleria fowleri cases were a Port Malabar Elementary third-grader who swam at Max K. Rodes Park in West Melbourne in 2002 and a 6-year-old boy who was infected in 1980. Both children died. 
  
 DeLeon’s parents briefly attended Tuesday’s press conference, then returned to their son’s hospital room. 
  
 “We are so thankful that God has given us the miracle through this medical team and this hospital for having our son back and having him full of life. He’s a very energetic, adventurous, wonderful teen,” said Brunilda Gonzalez, DeLeon’s mother. 
  
 Because only four victims have survived brain-eating amoeba in the U.S., Wadhawan said researchers do not know precisely why they lived. However, the Florida Hospital for Children medical team hopes its treatment of DeLeon will shape emergency-room protocols across the nation. 
  
 Doctors praised the speedy use of miltefosine, an oral anti-parasitic drug that was delivered to the hospital within 12 minutes by the Orlando-based company Profounda. Miltefosine was administered to three of the four amoeba survivors, Profounda Chief Executive Officer Todd Maclaughlan told reporters. 
  
 The drug is recommended by the Centers for Disease Control and Prevention, but has not been approved for this application by the Federal Food and Drug Administration, Maclaughlan said. 
  
 Sheila Black, laboratory coordinator, earned kudos from doctors for first spotting the amoeba in a sample of DeLeon’s spinal fluid. She said the single-cell organisms resemble white blood cells under a microscope. 
  
 “I went back and studied it for a while. The amoeba aren’t always necessarily very active, so you literally have to look and watch. And that’s when I saw the pseudopods moving on the amoeba,” Black said. 
  
 On Sept. 9, Florida Hospital for Children is sponsoring the second annual Amoeba Summit, which is presented by the Jordan Smelski Foundation for Amoeba Awareness. 
  
 Contact Neale at 321-242-3638, rneale@floridatoday.com or follow @RickNeale1 on Twitter 
  
 Read or Share this story: http://on.flatoday.com/2bRVh1B ||||| The disease is generally fatal 3; among well-documented cases, there are only five known survivors in North America: one from the U.S. in 1978 5, one from Mexico in 2003 6, two from the U.S. in 2013 4, 7, 8, and one from the U.S. in 2016. The original U.S. survivor’s condition gradually improved during a one-month hospitalization. The only reported side effect to treatment was a reduction in leg sensation for two months after discharge, which gradually improved. There was also no detection of Naegleria fowleri 3 days post-treatment 5. It has been suggested that the original survivor’s strain of Naegleria fowleri may have been less virulent, which contributed to the patient’s recovery. In laboratory experiments, the California survivor’s strain did not cause damage to cells as quickly as other strains, suggesting that it is less virulent than strains recovered from other fatal cases 9. 
  
 The Mexico survivor’s condition did not begin to improve until 40 hours after hospital admission. On day 22 of admission, there was no abnormality shown in the brain scan and the patient was discharged the next day. The patient was followed up for the next 12 months without any recurrence of disease 6. 
  
 After 35 years without a Naegleria survivor in the United States, during the summer of 2013, two children with Naegleria fowleri infection survived. The first, a 12-year-old girl, was diagnosed with PAM approximately 30 hours after becoming ill and was started on the recommended treatment within 36 hours. She also received the investigational drug miltefosine, and her brain swelling was aggressively managed with treatments that included therapeutic hypothermia (cooling the body below normal body temperature). This patient made a full neurologic recovery and returned to school. Her recovery has been attributed to early diagnosis and treatment and novel therapeutics including miltefosine and hypothermia 7. 
  
 The second, 8-year-old, child is also considered a PAM survivor, although he has suffered what is likely permanent brain damage. He was also treated with miltefosine but was diagnosed and treated several days after his symptoms began. Therapeutic hypothermia was not used in this case 8. 
  
 In the summer of 2016, a 16-year-old boy was reported as the 4th U.S. PAM survivor. This patient was diagnosed within hours of presentation to the hospital and was treated with the same protocol used for the 12-year-old 2013 survivor. This patient also made a full neurologic recovery and returned to school. 
  
 Overall, the outlook for people who get this disease is poor, although early diagnosis and new treatments might increase the chances for survival. ||||| The story of how 16-year-old Sebastian DeLeon survived a brain-eating amoeba that is almost always fatal started with a typical summer Florida dip in warm water. 
  
 DeLeon — "a very energetic adventurous teen," as his mom Brunilda Gonzalez describes him — was swimming in a body of water on private property in Broward County on Aug. 5. 
  
 That's when, unbeknownst to him, the amoeba entered his nose and began making its way to his brain. 
  
 Just two days later, while the camp counselor from South Florida was vacationing with his family in Orlando, Sebastian got a headache so severe that he couldn't bear for anybody to touch him. 
  
 His parents rushed him to Florida Hospital for Children, where Dr. Dennis Hernandez, an emergency physician, examined the teen, who was alert and talking. 
  
 Call it "divine intervention and a gut instinct," Hernandez said, but he decided not to stop at a migraine diagnosis. He took a sample of the teen's spinal fluid and sent it to the lab. 
  
 CAPTION Denniseya Pugh, 19, a survivor of childhood trauma, talks about the benefits of mental health counseling for teens, during an interview at the Children's Home Society in Orlando, Monday, August 6, 2018. (Joe Burbank/Orlando Sentinel) Denniseya Pugh, 19, a survivor of childhood trauma, talks about the benefits of mental health counseling for teens, during an interview at the Children's Home Society in Orlando, Monday, August 6, 2018. (Joe Burbank/Orlando Sentinel) CAPTION Doctors at Osceola Regional Medical Center performed the 100th transcatheter aortic valve replacement on Ramona Centeno Santos, a Puerto Rican evacuee, who moved in with her granddaughter after Hurricane Maria swept away her house in September. Doctors at Osceola Regional Medical Center performed the 100th transcatheter aortic valve replacement on Ramona Centeno Santos, a Puerto Rican evacuee, who moved in with her granddaughter after Hurricane Maria swept away her house in September. 
  
 There, Sheila Black, a laboratory coordinator, peered at a small drop of the spinal fluid under the microscope. Nothing of significance. 
  
 She removed the slide and glanced at the patient's information one more time: A 16-year-old male with severe headache. 
  
 "So I went back and studied the slide again for a while," Black said. And this time she saw them: the brain-eating amoebas trying to blend in with the white blood cells. 
  
 There have only been 138 such cases of Naegleria fowleri in the United States between 1962 and 2015, according to the Centers for Disease Control and Prevention. 
  
 The amoeba, which kills 97 percent of its victims, damages the brain tissue; its early signs and symptoms — headache, fever, and vomiting — may not lead to correct diagnosis. 
  
 Most infections occur during the hot summer months while swimming, diving, water skiing and wake boarding in lakes, rivers or hot springs. 
  
 By the time the disease turns serious, it's usually too late to stop it. That was the worry when Sebastian was diagnosed. 
  
 But the next part of Sebastian's story would fall under what Hernandez called divine intervention. 
  
 The only U.S. manufacturer of the drug that was recently approved to treat the Naegleria fowleri infection is a little-known company named Profounda, which is located in Orlando. 
  
 After the company got the call from the hospital, the drug to treat Sebastian was delivered in 12 minutes. 
  
 Most hospitals don't carry the drug, miltefosine. When needed, it's usually shipped from the CDC, but that can take too long. 
  
 This happened when 11-year-old Jordan Smelski of Sanford was infected in 2014 after swimming in a resort pool in Costa Rica. The drug arrived at Florida Hospital Orlando two hours after he died, said his dad, Steve Smelski. 
  
 Since then, the Smelskis have been working tirelessly to raise awareness about the amoeba. They've created a foundation, and in collaboration with Florida Hospital, they held their first annual amoeba summit last year. 
  
 Black, the lab coordinator, had attended that summit, not knowing she would help diagnose a case one year later. 
  
 By the time the medicine was delivered to the hospital for Sebastian, he had been transported to the ICU. He took the pill, and the doctors went to work. 
  
 They put him in a chemically induced coma, monitored the pressure in his brain, and cooled his body to 33 degrees with the hopes of stopping the amoeba from damaging his brain. 
  
 "I had to tell the family to tell their goodbyes and say everything they wanted to tell their child," said an emotional Dr. Humberto Liriano, a pediatric intensive care specialist who cared for DeLeon. 
  
 But 72 hours later, when doctors brought DeLeon out of the coma and removed his breathing tube, he spoke. 
  
 "At that moment we knew he was OK," he said. 
  
 DeLeon is still weak, but he's walking and talking. He has take his medicine for another two weeks. His doctors said they're optimistic about his long-term outcome, but it's hard to know because very few patients have survived the amoeba. 
  
 "It's very emotional for us," said Smelski, who has been fighting to have the hospitals carry the drug. "When this disease happens, every minute counts." 
  
 nmiller@orlandosentinel.com or 407-420-5158 |||||
A 16-year-old South Florida boy has made a miraculous recovery after becoming infected with a rare brain-eating amoeba. Sebastian DeLeon is only the fourth person in the US to survive an infection by the Naegleria fowleri parasite, which he contracted while swimming, Florida Today reports. On Aug. 5, the teen was at an Orlando theme park with his family when he was overcome with headache so excruciating that he "couldn't tolerate people touching him,” said Dr. Humberto Lirian, a critical care pediatrician. Sebastian’s parents took him to Florida Hospital for Children, where Dr. Dennis Hernandez decided not to stop at a migraine diagnosis and took a sample of his spinal fluid—a move that saved the boy’s life. Call it "divine intervention and a gut instinct," Hernandez said, the Orlando Sentinel reports. Other symptoms can include fever, nausea, and seizures. A lab test revealed the deadly amoeba, which can be tough to spot, and doctors immediately reached out to the maker of a drug recently approved to treat the parasite—the company, Profounda, happens to be based in Orlando. After Profounda got the call, notes the Sentinel, "the drug to treat Sebastian was delivered in 12 minutes." Miltefosine isn't commonly stocked by hospitals, which cost the life of an 11-year-old Florida boy in 2014, but that may change after Sebastian’s close call. Quick treatment was credited with saving a 12-year-old in Arkansas in 2014. Only three people out of 138 have survived infection, according to the CDC. For the DeLeon family at least, there is a happy ending. “We are so thankful that God has given us the miracle,” said the teen’s mother, Brunilda Gonzalez. (In June, an 18-year-old in Ohio died after becoming infected on a white-water rafting trip.)