Kamyrn Leigh Jones’ favorite movie is “Frozen.”
It’s one of the only things that calms and relaxes her between her daily seizures.
Just months ago, she was just as healthy as most other 8-year-olds.
But in May, Kamyrn had a severe seizure at school. She was taken to a hospital in Mobile, where she remained in intensive care for four days.
When she got out, her grandparents and caretakers, Jimmy and Miss Donna Jones, brought her to the University of Mississippi Medical Center.
By June, after numerous doctor visits, the Long Beach girl was diagnosed with a very rare disease called spinocerebellar ataxia.
“It was a devastating moment,” Jimmy Jones said. “It just came out of left field, so quickly.”
The neuro-degenerative disease is often fatal and so far there is no cure.
Not long after her diagnosis and unbeknownst to the family, the Make-A-Wish Foundation got involved.
They found out about Kamyrn’s favorite movie and started planning a way to make her biggest dream a reality.
The foundation got in touch with the Island School of Performing Arts, who sent the characters Elsa and Anna from “Frozen” to Kamyrn’s Long Beach home Saturday. Surrounded by friends and family, Elsa placed a princess crown on Kamyrn’s head. Then she put makeup on her.
Later this month, Kamyrn will be headed to Disney World for a week.
Jones said when he heard the foundation was going to step in, it was like a sliver of light in a dark room.
“We were trying to deal with that, you know, with Kamyrn, and what it all meant,” he said. “It’s almost as overwhelming as learning about the disease — but on the good side — to learn that Make-A-Wish was stepping in.”
“Frozen” tells the story of a fearless princess who sets off alongside a rugged iceman, his pet reindeer and a snowman on an epic journey to find her sister, whose icy powers have trapped the kingdom in eternal winter.
For Kamyrn’s friends and family, it’s not difficult to see how Kamyrn resembles the princess. To them, she’s a real-life princess. She, too, has had quite a journey in the last couple months.
And her grandpa said he is overwhelmed by her courage and resolve in the face of adversity.
“She’s a fighter,” he said. “She’s always been tough. She’s going to battle this disease with everything she’s got.”
“She touches hearts,” he said. “She has been that way since she was born.”
The family has set up a fundraiser page to help with some of Kamyrn’s medical expenses. It can be found by typing in Kamyrn Leigh Jones on the YouCaring.com website.