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'It feels a little like a horror story': Washington toddler hospitalized fighting rare infection

All four of Charlotte Johnson's limbs will be amputated because the bacterial infection has cut off her blood supply, causing tissue death.

A Washington toddler is fighting for her life after getting an extremely rare infection in her blood.

The disease is causing almost 2-year-old Charlotte Rose Johnson to lose all four limbs.

Charlotte's family describes her as a funny, energetic, smart and rambunctious little girl who loves to color and read. She's also a "shoe-aholic," they say.

"She's a hoot, you know," her grandmother Debra Atwood said.

"She's the apple of all our eyes," her other grandmother Brenda Kohlschmidt added.

Now, add the word fighter to that list.

"It feels a little like a horror story or a nightmare you can't wake up from," Atwood said.

Two days after a trip to California to see family and visit her cousins, Charlotte came down with a rare and often-deadly disease.

"It came on very, very quickly and we didn't see it coming at all," Atwood said.

The fever hit first, followed by a rash and bleeding into her skin.

She was rushed to OHSU Doernbecher Children's Hospital where doctors diagnosed her as having meningococcemia, or meningococcal septicemia. It's a severe type of blood poisoning caused by bacteria. 

It creates small blood clots in the blood vessels, which stops blood from flowing. The blood spots and bruising on her skin are called purpura fulminans.

According to researchers, around half of cases are deadly if untreated.

Charlotte's kidneys are failing so she's now on dialysis. She's also on a respirator because of pneumonia.

"She almost didn't make it the first night, and she's struggled ever since," Kohlschmidt said. "Every day it's an up and down: How'd she do last night? How's she doing this morning? Things are changing all the time."

All four of her limbs will be amputated because the bacteria has cut off the blood supply to her skin, muscles and organs and caused a type of tissue death.

"It's going to be so hard. I know she's going to want to put her shoes on and she's not going to understand. She's going to grow accustomed to this but at first, it'll be really hard not being able to pick up crayons," Kohlschmidt said.

Babies and young kids are at the highest risk for meningococcemia. It spreads through fluid from a carrier's nose and throat, who often doesn't present any symptoms.

Charlotte is healthy and has no underlying issues. The family doesn't know how or where she was exposed - whether it was in Oregon, California or traveling in between.

Two kinds of vaccines protect against many meningococcal diseases, but not all. Healthy babies in the United States generally don't get them.

"We need the word to get out that this could happen to your baby. If they could get a COVID vaccine in a year they can figure out how to give this vaccine to babies," Atwood said.

Charlotte is expected to be in the hospital for months. When she gets out she'll need constant care. 

"We are heartbroken every second of the day and we have our kids... it's difficult. It's so hard to see that with them too," the grandmothers said.

The family tries to find hope in the smallest of improvements, believing in their little fighter.

"We're going to power through," Atwood said.

"Yep, we have our moments and then we get back to positive and prayers," Kohlschmidt added.

The grandmas told KGW their whole family had to take antibiotics and the little kids Charlotte was around got vaccinated. 

The family is raising money to pay for medical bills. You can donate to this GoFundMe the family has set up, or mail donations to Haley Atwood for Charlotte's Fund c/o Castparts Federal Credit Union 8120 SE Luther Rd, Portland, OR 97206.

CORRECTION: An early version of this story referred to Charlotte as an infant. This error has been fixed.