Local 12-year-old girl 'trapped in her own body' with rare autoimmune disease

Viki and Troy McKee say their daughter Haleigh, 12, was just another smart, funny, "goofy diva" of a kid before she was diagnosed in October with a rare disease called Hashimoto's encephalopathy, rendering her essentially trapped in her own body.

Doctors told the Flagler Estates family their daughter was just the 201st patient to be diagnosed with the autoimmune disease since 1966, although research has shown the condition was likely to have been significantly underdiagnosed in the past.

Symptoms include behavior changes, disorientation, headaches, vertigo, loss of motor skills, seizures, sleep abnormalities and speech problems, all of which Haleigh has displayed before and since her diagnosis.

Left untreated, Hashimoto's can result in coma and death. Duration of symptoms and treatment have lasted anywhere between two months and 25 years, leaving a discouragingly large window of uncertainty for the family to mull over.

Nearly four months after her diagnosis, Haleigh still has trouble communicating and cannot get around without help. But her spirits remain high.

"The things you take for granted can be taken away from you," Viki said. "To be able to walk and talk, and for that to be taken away in an instant, I just can't imagine how hard it is for her."

Showing signs

It all started Sept. 30 when Haleigh came home from school with a low-grade fever, loss of appetite, nausea and some uncharacteristic lethargy. The fever passed within the next couple of days but she soon complained of blurry vision and neck pain.

In the early hours of Oct. 4, Troy and Viki thought they heard Haleigh throwing up. When Troy went to check on her, he discovered she was having what appeared to be a seizure. It was all too strange for a girl who, until then, had been in perfect health.

Viki immediately took her to Baptist Medical Center South in Jacksonville. Haleigh was nonresponsive when they arrived, but doctors were able to revive her. What followed were a series of tests and a barrage of questions Viki said is all just a blur now.

"They said things were pretty bad, just from her symptoms and the things I had told them were going on, so they rushed her by ambulance to Wolfson Children's Hospital," Viki said. "We were there five and a half weeks."

Troy said after three MRIs, an ultrasound to look at every organ in Haleigh's body and several blood tests, doctors still weren't sure what was going on, but it had been determined there was swelling in her brain.

In the meantime, Haleigh's condition spiraled downward. Her eyes were "jumping up and down almost nonstop," and she was screaming, thrashing and likely hallucinating. She was put on heavy sedatives, including morphine, and anti-psychotic medicine.

"They said she had delirium," Troy said. "She would just scream at the top of her lungs and look at you like she didn't recognize you."

It was virtually impossible to keep any fluids or foods in her, causing a drop in weight from 64 pounds to just 52 pounds. She was bedridden and elected to spend much of her time in a fetal position because she was suffering vertigo. She also went nonverbal.

"It was like she lost complete control of her body," Viki said.

The presence of thyroid peroxidase (TPO) antibodies in Haleigh's blood, more commonly found in the thyroid, led doctors to their diagnosis of Hashimoto's.

Troy said the TPO antibodies didn't attack Haleigh's thyroid but rather her brain stem, which, among other bodily functions, controls motor skills and speech capabilities.

"Once it attacked back there, she literally went from. ..." Viki said, crying and unable to finish her sentence.

"A typical 11-year-old girl to, basically, an 11-year-old infant," Troy said, taking it upon himself to complete Viki's thought.

Ups and downs

Treatment at Wolfson included intravenous immunoglobulin (IVIG) therapy, with the goal of stopping the production of TPO antibodies in Haleigh's body, and then plasmapheresis, in order to draw her blood through one port, filter it through a machine and pump the clean blood back into her body via another port.

Throughout her time at Wolfson, Haleigh remained nonverbal. Her screaming and thrashing subsided into an inability to move on her own, which resulted in muscle atrophy.

She was unable to sleep through the night, as was Viki, who spent the five and a half weeks at Wolfson by Haleigh's side.

"I am not the same person I was when I entered the hospital with her," Viki said. "Your perspective on life and on human beings is completely different."

For a while, the only way Haleigh could communicate was to lift one finger for "Yes" and two fingers for "No," which, of course, created many limitations.

Viki said weeks passed where things weren't getting worse but she couldn't say they were getting much better, either.

Haleigh's first word was "mom," on Nov. 24, after nearly six weeks without saying anything. It was around then she began eating small amounts of food again.

By mid-November, Haleigh was transferred to Brooks Rehabilitation in Jacksonville, where she remained for about a month. Therapy was slow going and remains so today.

"She's trapped inside this body she can't do anything with," Viki said. "She's had to learn everything she's doing all over again."

Everything had been put on hold.

Haleigh, a sixth-grader at Gamble Rogers Middle School, played trombone in the band, loved gym, and took advanced classes in world history and language arts. She would video-chat with friends, go to sleepovers and do all the typical things girls do.

"It literally happened overnight where everything just changed and our lives went on a completely different path," Viki said. "In the 20-plus years Troy and I have been together, this is absolutely the hardest thing we've been through - and we've been through a lot of stuff."

The McKees' son Austin, 13, had been diagnosed with autism when he was 2 years old. When they were growing up, Haleigh had helped Austin stay engaged and work through the difficulties of living with autism.

Austin now takes the initiative in engaging in conversation with Haleigh, who largely communicates by pointing to letters on an alphabet chart while trying to sound out what she wants to say. She is still unable to hold a conversation for very long and does not have the motor skills to write or type what she wants to say. An experiment with a speech-generating device was short-lived, as it proved too difficult for her to operate.

When the McKees were at the supermarket not long ago, bringing Haleigh along in a wheelchair, she became frustrated when she couldn't tell them what she wanted. They had left her alphabet chart in the car.

"It took me, like, 10 minutes to figure out she wanted fruit," Viki said.

Haleigh had taken it in stride, however, landing a playful forehead smack and laughing.

"We've had some pretty good moments and we've had some pretty horrible moments, but through it all she has really maintained that sense of humor," Viki said. "Not always, because sometimes it's totally frustrating, but she will get better. She's a tough kid."

Group effort

Viki said they're thankful for all the help they've received from family, friends, neighbors and even strangers.

Gas cards and help with groceries allowed Troy and Austin to come up to Wolfson and Brooks on weekends and some weekdays, whenever possible. Before Haleigh returned home Dec. 12, neighbors and friends had helped the McKees by building and installing a wheelchair ramp from their driveway to their front door. But the challenges remain numerous.

"Financially, everything's gone," Viki said. "The bills don't stop."

Troy works for St. Johns County as a paving and drainage inspector. Viki had taken a 3-month leave of absence from her work as a hairdresser. She now works just one day a week, which she said is mostly for her sanity's sake, as it's a chance to get out of the house and think about something else.

Troy and Viki said they've always been private, independent people and so it's been particularly hard to ask for help in any form.

The McKees had declined a previous request for an interview with The Record, citing those reasons.

Viki said she hopes to find others who have been diagnosed with Hashimoto's encephalopathy so they can get a better idea of what Haleigh can expect to encounter on her road to recovery - and how long that road may be.

While the family is happy Haleigh is out of the hospital, life has remained hectic and full of appointments.

"She sees an endocrinologist, she sees a rheumatologist, she sees a nephrologist, she sees a neurologist, she sees an optometrist, and I can't remember them all," Viki said. "There's physical therapy, speech therapy, a teacher who comes out twice a week for hospital/homebound schooling, and I can go on and on."

But there is some time for play. Haleigh celebrated her 12th birthday Jan. 1, and a few of her friends have been able to visit from time to time.

Troy said progress is being made almost every day, but it can often feel like taking two steps forward and one step back.

Although her vertigo has subsided considerably, Haleigh still requires special glasses that are fogged on one side, changing each day, in order to help reduce her double vision.

The first week in February will mark the 120-day mark since Haleigh's last plasmapheresis treatments, which is significant because that is the average lifespan of a TPO antibody.

Haleigh's most recent checkup indicated her levels were still elevated, although they were down considerably from where she started.

As they await the results of her treatment thus far, the McKees celebrate the small victories. On Jan. 18, for instance, Haleigh was able to sit up on her own from laying down flat on her back for the first time since she got sick.

Troy and Viki credited Haleigh's attitude, a lot of prayer and some "constructive criticism" to the progress she has made.

"It's all out of love," Viki said. "We've always been a very close family but this, in its own way, has probably brought us a lot closer."

Viki asked Haleigh what she is.

"I'm a fighter," she replied, slowly but surely.