Sniffles aren’t unusual in a toddler, so Jess Thomas didn’t worry when her daughter seemed a little sick that morning.
As Kidspot reports, the mom from Moree, Australia had noticed that 2-year-old daughter Paige was out of sorts on the morning of August 7. The toddler was moody and had a runny nose along with a low-grade fever. But experienced parents know that minor illnesses are just a fact of life when it comes to small children.GoFundMe
Nothing told the mom that her daughter was much sicker than she looked. Jess told Mamamia:
“It was just a normal day. I was at home with Paige that day, we went to the kinder gym that morning and she was jumping on the balancing beams, and going through the tunnel, having a great time.”
That afternoon, she went to pick up her nieces from school and saw that Paige was walking slowly and seemed “a bit off.” When they arrived home, Jess got her first indication that something was very wrong. She told Kidspot:
“Paige was playing and being silly. Then all of a sudden she started shaking all over. I knew something wasn’t right so I took her straight to Moree hospital.”
She added that her daughter’s condition rapidly declined. The toddler “was in and out, like falling asleep,” on the drive to the hospital and vomited as they waited for treatment in the emergency room.
At first, doctors believed that Paige’s high fever, seizures, and vomiting were symptoms of meningitis. That night, she was transferred to another hospital, then flown the next day to a children’s hospital in Sydney.
An MRI revealed that Paige had suffered significant brain damage. Doctors diagnosed the toddler with Acute Necrotizing Encephalopathy (ANE), a rare brain disease that often follows a viral infection, such as the flu.
According to the National Institutes of Health, ANE usually occurs in early childhood. The condition generally begins with flu-like symptoms like fever, congestion, vomiting, or a cough. It then progresses to neurological symptoms, including seizures, hallucinations, and coordination problems.
The condition has a genetic component, though it is unclear how the gene mutations associated with ANE are involved in the process wherein a viral infection triggers the brain disease. Influenza is the most common trigger for ANE, though enterovirus, coxsackie virus, and human herpesvirus 6 have also been known to cause ANE.
About one third of ANE sufferers do not survive the initial illness and subsequent neurological effects. Among those that do survive, about half will suffer permanent brain damage resulting in difficulty with speech, walking, or other functions. There is also a chance that the condition will recur in the future. However, some victims of ANE are able to recover completely.
Paige’s father, Adam, told Mamamia that hearing his daughter had ANE was devastating:
“It was the worst thing you can possibly hear. I just couldn’t talk, to be honest. The first thing we asked was, ‘How do we fix it?’ and they told us you can’t really fix it. To see thirty people standing around your little girl who’s just two years old is pretty tough. It was pretty brutal, excruciating, to watch.”
More than once, Adam and Jess were told that their daughter wouldn’t survive, but every time, Paige pulled through. She was even briefly put in hospice care before her unexpected recovery sent her back to the hospital. Adam told Mamamia:
“It’s a horrible thing to think that you can have a perfectly normal life three weeks ago, just with a kid with a bit of a runny nose and that was it.
It’s been really hard to fathom what’s happened. When you go to a hospital and they tell you there’s nothing they can do, that’s really tough. There’s nothing you can do for an ANE patient, you can’t operate on them, you can’t do anything really.”
Because of the brain damage caused by ANE, Paige’s prognosis is uncertain. Doctors told her parents that she would require a feeding tube for the rest of her life. Less than a month later, her parents were thrilled to see her eating on her own.
Paige’s parents have been beside their daughter’s hospital bed, far from home, for weeks. They don’t yet know what complications their daughter will face or what kind of rehabilitation she will require in the future.
The family has set up a GoFundMe page to help cover medical treatments and other financial needs. Though Paige’s future is still unknown, her father told Mamamia that he’s proud of how tough his daughter has proven to be:
“I’ve always said, Paige will decide what she wants to do. We’re very proud parents that she’s fighting hard. We’re focused on doing the best we can for Paige, to give her the best quality of life that she can have.”