On August 5, 2016, four-year-old Tiaré Johnston went into the hospital for what ought to have been a routine tonsil and adenoid removal surgery. Immediately following the procedure, Tiaré seemed to be recovering well.
The doctors discharged her from the hospital and allowed her to go home.
But then, just days later, Tiaré’s parents found her lying face down, unresponsive in a pool of her own vomit. When her parents couldn’t get her to wake up, they rushed her to the hospital.
Emergency responders determined, en route to the hospital, that Tiaré had contracted a serious viral infection. She slowly lost her ability to speak as her temperature steadily rose to 104F.
At the hospital, Tiaré’s doctors were just as confused. After lowering her fever, they conducted test after test, to try and determine the cause of the viral infection. But all the results were inconclusive. Doctors could find no solid evidence that Tiaré had contracted the infection during the tonsil and adenoid removal procedure.
The only thing doctors were able to determine was Tiaré’s condition.
She was diagnosed with acute necrotizing encephalopathy (ANE) occurs following a severe viral infection. It is incredibly aggressive and causes extensive, potentially irreparable brain damage.
For Tiaré, doctors noted that the damage her brain is sustaining has been reported in just about a couple hundred cases. In hopes of keeping the damage contained, doctors have kept her sedated for over a week by using steroids and IV immunoglobin.
Tiaré’s mother, Tamara, recalled, “When [my husband and I] looked at the MRI [of Tiaré’s brain], there was a lot of damage but it couldn’t determine what would be permanent and what would be temporary.”
Because of this uncertainty, doctors offered to take Tiaré off her ventilator and just allow her to pass. But the Johnstons vetoed this idea. “We wanted to give her every chance,” Tamara said.
Doctors agreed to keep Tiaré on the ventilator then, but made no promises to the family about the little girl’s health. According to the family’s GoFundMe page, of the patients who do survive ANE, “about half have permanent brain damage due to tissue necrosis, resulting in impairments in walking, speech, and other basic functions.
“Unfortunately at this point in time Tiaré cannot speak, or use her limbs with purpose. The neurologist said there is still the possibility she could succumb to her medical problems.”
But even in spite of these challenges and obstacles, the family refuses to give up. And Tiaré continues to fight each day to regain control of her health.
She underwent brain surgery to release some of the pressure in her skull and has successfully recovered from that. Her sedation medication was slowly reduced to wake her. Her eyes opened every now and then, and she’s beginning to grind her teeth in her sleep.
A few months ago, many of Tiaré’s organs were damaged and or failing. Now, her lungs have strengthened, her kidneys have regained normal function, and her liver is almost back at normal function as well.
"We have a big rehabilitation journey ahead of us," said Tamara. "Tiaré is very sick but doing an awesome job of trying not to be.” Even in poor health, Tiaré continues to be her parents’ “little sunshine.”
Just a couple weeks ago, the family updated their fundraising page with good news. After being woken up, Tiaré has since been able to regain some communication skills and begin relearning how to crawl. Doctors are continuously monitoring her progress and happy to note that the little girl is either constantly on the mend, or able to maintain her health as it currently stands.
If you can, please consider donating to the Johnston’s fundraising page. Tiaré continues to improve with each passing day, but as it stands, the family has already has to spend a lot of money to travel to the hospital, pay for their daughter’s medical bills, buy food, and take care of Tiaré’s little sister in the meantime.
Every single dollar helps and will surely go a long way. “We want Tiaré to live her life to her full potential and get back to enjoying swimming lessons and her ballet scholarship,” Tamara said.
Our thoughts and prayers go out to this brave little girl.