'They told me it was a death sentence': Only four Americans have ever survived after being infected with brain-eating amoeba – these are the stories of two of those victims

Only four people in the US have ever caught a deadly brain-eating amoeba that claimed the life of a toddler last week and lived to tell the tale.

Kali Hardig, now 22, and from Arkansas, was only 12 years old when she was struck by Naegleria fowleri, which doctors think she caught at a water park.

They told her it was a ‘death sentence’ and gave her just four days to live, but a decade on she is swimming again and, last November, became a mother for the first time. She only occasionally struggles with blurry vision in her left eye due to scar tissue from the disease.

Fourteen-year-old Caleb Ziegelbauer, from Florida, is also now a year on from being infected with the microscopic species that kills 97 percent of its victims.

Caleb is now walking somewhat but the damage done to his brain means he needs to communicate with facial expressions and has to use a wheelchair. 

Kali Hardig, 22, survived her infection with the brain-eating amoeba from a decade ago. She became a mother last November with her daughter Adalynn (shown with Kali) now being 10 months old. She also still has occasional blurry vision in her left eye

Kali Hardig, 22, survived her infection with the brain-eating amoeba from a decade ago. She became a mother last November with her daughter Adalynn (shown with Kali) now being 10 months old. She also still has occasional blurry vision in her left eye

Caleb Ziegelbauer, 14, was infected with the amoeba about a year ago after swimming at a river estuary. He is now able to stand up, walk and somewhat talk, although he still needs a wheelchair

Caleb Ziegelbauer, 14, was infected with the amoeba about a year ago after swimming at a river estuary. He is now able to stand up, walk and somewhat talk, although he still needs a wheelchair

Official records show 157 people in the US were infected with the disease between 1962 and 2022, of which only four survived.

Five deaths from the amoeba have been reported this year, with the latest being a one-year-old toddler from Arkansas who died on September 4. 

There are fears warming temperatures will heat freshwater pools nationwide, leaving more people at risk of the amoeba.

Among the lucky few survivors is Ms Hardig, who was infected with the deadly amoeba in 2013 when she was just 12 years old after swimming at Willow Springs Water Park near her home.

‘A death sentence is what they called it,’ she told KARK, describing the moment she was diagnosed. 

‘They told my parents by Sunday I would be gone, because that’s how fast it moves.’

But after receiving surgery to deliver medicines directly to her brain and the anti-amoeba drug miltefosine from Germany, she made a remarkable recovery.

Ten years on from the infection, she said the only effect she is still suffering is occasional blurry vision in her left eye.

‘It causes me to have some blurry vision every now and then, but that’s about the only long-lasting effect I have from it,’ she said.

Doctors said that she also had scarring in her brain, but added that this should not impair her abilities.

Her father Joseph told WHYY in 2016: ‘The doctor, he said, “She does have some scarring on her brain, but picture your brain like a fuse box. Your core of your brain is your fuse box, and the fuse box runs out to the rest of your brain like electrical outlets. Well, some of her electrical outlets have some damage on them, but her fuse box is good. The brain will reroute and go around these”.’

She has since moved to Oblong, Illinois, where she works as a receptionist at security company Allied Universal.

Last November, she welcomed her daugher Adalynn Hardig into the world.

Ms Hardig said she was like a 'brand-new baby' after the infection and had to relearn everything including how to walk, talk, read and write

Ms Hardig said she was like a ‘brand-new baby’ after the infection and had to relearn everything including how to walk, talk, read and write

She is pictured above at rehabilitation to regain her skills. A year after the infection she was able to go swimming again

She is pictured above at rehabilitation to regain her skills. A year after the infection she was able to go swimming again

Ms Hardig began suffering a constant pounding headache days after she went swimming in a pond near her home in 2013.

Her mother initially thought she was dehydrated and doctors thought it was a bad case of the flu, but tests quickly revealed the amoeba in her body.

She was kept in hospital for 55 days and, after fighting off the infection, said she was like a ‘brand-new baby’ who needed to relearn to walk, talk, write and read again.

A year after her ordeal she said she was still scared to touch any form of water, even that in the shower.

I was afraid to take a shower because I know that I got it from water, and I was thinking that it could be from all kinds of water, that it could be in the shower,’ she said.

He contracted the illness after he went swimming with his family at Port Charlotte Beach on July 1, 2022

He contracted the illness after he went swimming with his family at Port Charlotte Beach on July 1, 2022

But in August 2014, about a year after the infection, she overcame her fears to go for a swim again.

Talking about the moment in 2016, she said: ‘Once they let me swim in the pool at Children’s and I knew I wouldn’t get sick.

‘I was ecstatic, because I knew I could still swim. And I love to swim.’

People become infected with the amoeba after swimming in warm bodies of freshwater, such as lakes, where the amoeba thrives.

The infection begins in the nose, before traveling along the olfactory nerve to the brain.

In the early stages, patients suffer symptoms including a splitting headache, high fever, change in taste or smell and sensitivity to light. But this quickly progresses to hallucinations and seizures, killing most victims in days.

Another survivior is Caleb Ziegelbauer, aged 14, from Florida, who is now just over a year on from his infection on July 1, 2022.

Mr Ziegelbauer has had to relearn how to stand up, walk and talk again following the infection, like Ms Hardig.

In his latest interview in July this year, he was able to stand up, laugh and somewhat speak — but still needed to use a wheelchair and, at times, facial expressions in order to communicate.

He said: ‘I have come so far and yet I have a lot of progress.’

He added: ‘I can talk with my eyebrow.’

Caleb returned from intensive rehab in March, meaning he can now stand, laugh and communicate, though his speech is impaired

Caleb returned from intensive rehab in March, meaning he can now stand, laugh and communicate, though his speech is impaired

Like Ms Hardig, his family was also told they had just four days left with him after the deadly amoeba was diagnosed. Doctors now say they have never been happier to be wrong.

His symptoms began as a severe headache and fever after he visited Charlotte Beach, on the estuary between the freshwater Peace River and the saltwater Gulf of Mexico.

But they then progressed to hallucinations, prompting his family to rush him to hospital with his mother Jesse saying that during the one-hour car ride his condition ‘deteriorated rapidly’.

Doctors at Golisano Children’s Hospital, Fort Myers, placed him into a coma and administered medications for treatment.

His mother Jesse added: ‘He did tell me [Caleb] he heard me talking to him, saying Caleb if you can hear me come back.

‘I’ve promised as soon as he runs we want to do the 5K at Disney.’

Mr Ziegelbauer is also aiming to become an epidemiologist.

He added: ‘I was going to find the cure for Covid, but now I am going to find the vaccine for Naegleria fowleri.’ 

Patients who catch the amoeba and survive need to relearn everything like a brand new baby because of the damage done to their brains and nervous system.

The amoeba triggers inflammation and the destruction of brain tissue during an infection, affecting regions of the brain including those responsible for speech and language.

Doctors suggest the survival of both patients was down to a combination of early diagnosis, the treatments they received and luck.

Ms Hardig received the drug miltefosine — which is not routinely used against Naegleria fowleri — to treat her infection.

In Caleb’s case, doctors began to treat him for the amoeba seven days after he went swimming — which may have been early enough to head off the infection.

Doctors say the disease is becoming more common thanks to warming temperatures triggered by global warming.

Dr Dennis Kyle, the head of cellular biology at the University of Georgia, previously told FOX8: ‘We are experiencing warmer temperatures and these amoebae are thermal-tolerant… so the numbers of amoeba will be higher.

‘Warmer climate means, yes, more exposure and more cases.’

There are also concerns over Vibrio vulnificus, a dangerous bacteria that lives in warm seawater and can cause deadly infections.

Experts are also warning that infections with this are becoming more common thanks to warming seawaters. 

source: dailymail.co.uk