No child should have to endure the kind of suffering that six-year-old Kaylee T. has faced, but despite serious illness, the little girl from Gordonsville, Virginia “is a happy child in high spirits,” says her father and full-time caregiver, Jermaine.
Kaylee had just started kindergarten when one day in October 2014 she became violently ill and broke out in a rash. Her lips began to swell and blisters erupted inside her mouth. The condition quickly spread overnight. Jermaine called his wife, Daisy, and she immediately came home from work. They sped to the ER at the University of Virginia Medical Center 45 minutes away where Kaylee was admitted.
The diagnosis was Stevens-Johnson syndrome, a rare and dangerous disorder caused by an adverse reaction to medication. Jermaine was unable to provide further details due to pending litigation. According to Mayo Clinic, Stevens-Johnson often starts “with flu-like symptoms, followed by a painful red or purplish rash that spreads and blisters. The top layer of the affected skin dies and sheds.”
In Kaylee’s case, 95 percent of her skin came off and she lost the fingers on her left hand, and on the right, the tips of two fingers and her thumb. Her heart was also affected.
In November, Kaylee and her dad flew to Boston Shriners Hospital for Children. The hospital is a leading center in the care of burn wounds and specializes in treatment of Stevens-Johnson syndrome as well as other complex wounds and skin disorders. During his daughter’s five-month hospitalization, Jermaine stayed in an apartment made available by Shriners.
“We almost lost her twice,” he said, explaining that Kaylee was kept in a drug-induced coma because of extreme pain. “It was very difficult seeing my daughter in bed motionless and heavily drugged. But she came back both times. I’ve been beside her the whole time.”
He and Kaylee have taken 20 Angel Flights to Boston so far, with another trip scheduled for February 17 when she’ll have surgery on her left hand.
“All the pilots are nice,” Jermaine said. “They give her treats and stuff. She likes flying. She isn’t afraid or anything.”
Kaylee travels to UVA every other evening for ongoing therapy. Fortunately, her heart is back to normal and her fingers have straightened out. Like any little girl, she enjoys playing with dolls, reading, and drawing. Her 11-year-old brother, Khalil, “has been beside her since she’s been sick, although it was difficult for him at first,” Jermaine noted. “Our family is closer than ever. Kaylee has a good future. But we have a long road ahead.”