Nine-year-old Karsyn Caldwell received the surprise of a lifetime on Wednesday when "Elsa," "Anna" and "Olaf" — characters from Disney's hit franchise "Frozen" — visited her to announce her wish to visit Disney World had been granted by the Make a Wish Foundation.
Caldwell and her family will travel to Florida next week for a seven-day, all-expenses paid trip thanks to a nomination from a family friend who witnessed the difficult yet triumphant journey the family faced with Caldwell's recent diagnosis of Hashimoto encephalopathy.
In March 2018, Caldwell's teachers noticed she was suddenly not acting like her normal self. Chereth Caldwell, Karsyn's mother, said teachers began reporting, "Things aren't right with Karsyn. Something's off. She's not paying attention. I'm having a hard time getting her to do any of her tasks."
Caldwell began noticing the change at home, as well.
"Her symptoms included sitting off to herself, laughing uncontrollably about nothing and then when I would wake her up in the morning, she would immediately start talking to people ... It was very strange."
The symptoms were certainly alarming, but she had no apparent medical issues and local doctors initially found no significant diagnosis. Progressively, however, she began getting worse and worse, Chereth said.
Karsyn's hallucinations, regression with potty-training and paranoia led the family to seek treatment at Texas Children's Hospital in May 2018. Extensive labs, MRIs, a spinal tap and a host of other diagnostic tests revealed Karsyn suffered from the autoimmune disorder Hashimoto encephalopathy.
"Her body was attacking her brain," Chereth said.
Unlike typical cases of Hashimoto, her condition was unresponsive to steroidal treatment. Doctors considered the use of psychotropic drugs but Chereth said the family declined because, "We felt like it was a medical reason why she was acting like that."
Doctors then decided on an "extreme treatment" of plasmapheresis, which required an ICU stay and a central line to filter the body's blood supply. "She woke up in the ICU and immediately she was a different kid ... we could see the old Karsyn. She was still in there."
After 10 days of treatment the doctors were "amazed" at the effects of the treatment, Chereth said. "She was definitely locked in there. It proved it was antibodies that were affecting her brain because she came back."
After 28 days, the plasmapheresis was found to have positive but only short-term effects. "She would be with us for a day, but then she would fade away."
Without the plasmapheresis, the antibodies would build up again, greatly affecting her mental state. The family returned to Texas Children's and a variety of other medications and therapeutic techniques were tried but yielded no significant results.
Only the plasmapheresis showed any signs of improvement and eventually she received a permanent port to receive the treatment monthly.
"It would help her. She would be great but the week after we would get home she would be gone. She would just sit and stare."
Her mobility greatly decreased with her walking only backward or sideways and she was at one point confined to a wheelchair. Once again, her potty-training regressed and her speech was greatly impaired.
Chereth requested that doctors move her treatment up to weekly. "It was just a band-aid. It never fixed the problem. It was just taking it (anti-bodies) out but it was building right back. She had no great quality of life."
In January 2019, an experimental drug, Acterma, was found to be the solution to Karsyn's diagnosis.
"They've only had one other kid at Texas Children try it for the autoimmune encephalopathy," Chereth said.
By March, she was back to her old self.
"She was talking. Potty-trained again. I didn't potty-train her again, she just came back. Everything, all of her skills, they were still there. They were just locked inside."
Karsyn now receives a monthly treatment of Acterma and is scheduled to start weaning off the drug in January to determine if she's in remission.
"She's better than ever. Her speech is off the charts. She's back in school. She's learning. Everything is back or better than ever. It's been a miracle with lots of prayers."
Karsyn and the family will receive front-of-line access to all rides and attractions as part of their Make a Wish trip. Adrienne Zembower, Make a Wish volunteer, said the tight-knit family of eight is certainly deserving of the trip of lifetime.
"They're a very super close family. They're a large family, a very close family and they all adore Karsyn. From the moment I saw them, everything was about Karsyn."
Chereth is hopeful for Karsyn's health and future success.
"The sky's the limit for Karsyn. I really believe that," she said.