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Benefit planned for North Ridgeville girl stricken with rare brain infection (VIDEO)

  • Kaylee-Focht

    Kaylee Focht, 13, of North Ridgeville, is shown in July in a rehabilitation center in Cleveland. A benefit to offset the mounting medical bills will be 4 to 8 p.m. Sept. 15 at Aces Grille in North Ridgeville.

    PHOTO PROVIDED

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NORTH RIDGEVILLE — Eight days lapsed from the time Dan and Lori Focht saw their 13-year-old daughter, Kaylee Focht, go from happy-go-lucky to near death.

On June 24, Kaylee, a brown-haired teenager whose smile could light up a room, spent the day with her friends at Cedar Point, her dad said.

“They rode the Raptor over and over again,” Dan said. “After Cedar Point, they all had a sleepover and stayed up all night. That week, Kaylee complained of some headaches. We assumed it was from lack of sleep.”

But what was going on inside Kaylee’s body had nothing to do with exhaustion and everything to do with an infection started to ravage her brain.

On June 28, her younger sister, Jordan, 10, was sent home from her gymnastics class after she too complained of a headache and stomachache.

By the next day, the sisters were back to riding their bicycles around their North Ridgeville neighborhood, acting like everything was all right.

“We thought the bug had passed,” Lori said.

The morning of June 30, Kaylee once again complained of a small headache and stomachache.

That was also the day she started to forget.

“For example, we asked her what was the name of the roller coaster she rode over and over again and she said, ‘You know … the green one,’” Dan said, adding she could not remember the name of the Raptor, her favorite ride at Cedar Point.

Kaylee’s temperature rose to 99.9 degrees Fahrenheit on June 30, but she never complained of her neck hurting — a symptom of meningitis. However, she vomited a few times over the next two days.

“Her temperature never went over 100 degrees, but we decided this might be more than a bug and we were going to take Kaylee to her doctor on Monday,” Dan said.

The last time her family saw her being responsive was when she headed for bed about 10 p.m. July 1.

“Monday, July 2, at 7 a.m., will forever be frozen in time,” Dan said.

Both Dan and Lori opened the door to Kaylee’s room and what they saw was enough to bring them to their knees.

“We found her bed soaking wet, her eyes open and rolled back in her head, unresponsive, shaking, laying in a pile of vomit and barely breathing,” Dan said fighting back tears. “I called 911. ‘What’s your emergency?’ they asked. They couldn’t get here fast enough.”

Minutes later, a paramedic carried Kaylee from her bed in a blanket and took her to University Hospitals St. John Medical Center in Westlake via ambulance. Based on what Dan and Lori told the ER doctors, they began treating Kaylee for meningitis.

However, her temperature spiked to 105 degrees and she remained unresponsive.

“They took a sample of her spinal fluid and started treating her for a viral and bacterial infection. They tried to cool her down,” Lori said.

Nothing was working.

A decision was made to fly Kaylee to University Hospitals of Cleveland Rainbow Pediatrics Intensive Care Unit, but a breathing tube had to be inserted before she left in case she needed to be resuscitated during the flight.

Then, a priest was sent to the ER room, Lori said.

“We thought we were losing her,” Dan said. “Lori rode in the helicopter with Kaylee and I drove Jordan with to me the hospital, and thought, ‘Is this really happening?’ “

The next several hours were critical for Kaylee as she was sedated as the medical team worked to get her temperature down to 98.6 degrees using bags of ice.

By the evening of July 2, the Focht family had the answer to what happened to their oldest daughter — she was diagnosed with human herpes simplex virus (HSV-1) that caused meningoencephalitis.

In other words, the same infection that may cause a cold sore on a person’s mouth traveled to Kaylee’s meninges (the layers of thin tissue that cover the brain) and subsequently, her brain.

“She never had a cold sore. The HSV infection went to her brain instead. Normally, HSV results in a cold sore. They told us that if left untreated there is a 70 to 80 percent fatality rate, and if treated there is a 20 to 30 percent fatality rate,” Dan said.

An MRI revealed Kaylee has moderate brain damage on the left temporal lobe — the part of the brain that affects speech and memory.

From July 8 to 17, Kaylee was monitored on the neurological floor at University Hospitals Rainbow Babies and Children’s Hospital in Cleveland.

After being released from the hospital July 17, Kaylee was transferred to Cleveland Clinic Children’s Rehabilitation Hospital where she will remain until mid-September, if not longer.

Today, she undertakes hours of speech, occupational and physical therapy, as well as some schooling, in an effort to retrain her brain.

“The doctors are hopeful that Kaylee can have some sort of productive life,” Dan said. “Kaylee has a long road ahead. Only 3 percent recover fully and about 20 percent recover with 80 percent normalcy. Doctors said she would gain the most in six months, but will still progress some up to a year.”

Dan said Kaylee doesn’t hold conversations with others and will only answer a few questions at a time. She can, however, remember the lyrics to recording artist Train’s hit song, “Hey, Soul Sister.”

“She only started talking a couple weeks ago, but she can’t tell you what happened. They don’t think she will remember most of this. Her brain is still in an acute phase, still healing,” Dan said.

And, the only person Kaylee calls by name is her sister, Jordan.

“Jordan did cry, wondering why did this happen and just wanted her old sister back,” Lori said.

Lori said there are days when they see part of the “old Kaylee” shine through.

“Her laugh, smile, fighting with her sister, enjoying music and playing (the video game) ‘Just Dance,’” she said.

Kaylee’s brain is still processing what happened. She is able to read, write, tie shoes and dress herself but she has a difficult time swallowing. It’s a task that is taking a bit longer to relearn, Lori noted.

No one really knows how long it will be until Kaylee will return to her “old self.”

However, her family is her biggest support system and they are thankful she is alive.

“We are doing OK just knowing how far she has come and seeing all the progress,” Dan said. “We know we have a long road ahead and we are not sure how far she will make it back, but we are just grateful to have her here and she’s happy. When we found her, we thought we lost her. Everyday has been a blessing since.”

As a way to offset the family’s medical bills that have mounted since July 2, a fundraiser will be held 4 to 8 p.m. Sept. 15 at Aces Grille, 32650 Lorain Road, North Ridgeville. Cost is $20 for adults and $10 for children, with food included in the ticket price. Basket raffles and a 50/50 drawing will be featured during the benefit.

Family friend Rosemarie Trunkett, who has been the Fochts’ neighbor for 13 years, is co-chairing the event along with Tina Weppleman.

“My heart broke when they took her out into the ambulance,” Trunkett said. “She just got her braces off and was ready to go to the eighth grade. She’s so young and spirited. I have two daughters ages 30 and 26, and I can’t imagine this happening.”

To purchase tickets to the fundraiser, call (440) 525-3263 or (440) 567-9445. Tickets also will be available at the door.

For more information, visit the Facebook page dedicated to the fundraiser.

Contact Melissa Linebrink at 329-7243 or mlinebrink@chroniclet.com. Follow her on Twitter @MLinebrinkCT.
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