Virginia girl with Dravet syndrome gets Disney World trip

Posted at 5:18 AM, Dec 22, 2018
and last updated 2018-12-22 06:18:11-05

STAUNTON, Va. (AP) – Lucy Rhoden loves “Frozen.”

There are very few movies the 7-year-old Staunton girl will watch from start to finish. She loses interest in most within minutes, but not “Frozen,” a 2013 animated Walt Disney movie.

Travis Rhoden said it was the first movie his daughter ever watched all the way through. She’s now watched it many times. She knows the songs. She knows the dialogue. She loves the characters, especially Elsa, the Queen of Arendelle who has powers to create snow and ice.

So when the Rhoden family was given the opportunity by the Make-A-Wish Foundation to choose a wish for Lucy, one of the first ideas that came to mind was giving her a chance to meet Elsa.

That may sound difficult, considering Elsa is an animated character, but luckily for the Rhodens there’s a place that specializes in bringing animated characters to life – Walt Disney World in Florida.

Lucy has Dravet syndrome. According to the Dravet Syndrome Foundation website, the disease is a rare, catastrophic, lifelong form of epilepsy. The first symptoms in Lucy appeared just before she was three months old. She still has seizures that vary in intensity and duration.

Current treatment options are limited, according to the Foundation’s website, and constant care is required for those with Dravet syndrome. Patients with Dravet syndrome face a 15- to 20-percent mortality rate.

It’s a constant struggle for the Rhodens, which is why the Make-A-Wish trip is so exciting for the family. It will give them a chance to do something out of their normal routine and, hopefully, bring joy into Lucy’s life.

This month, Lucy Rhoden, her family, and her friends in Renee Monger’s second-grade class at Staunton’s Bessie Weller Elementary School celebrated the Make-A-Wish trip with a “Frozen”-themed party, complete with cupcakes, video clips from the movie and a game of pin the nose on Olaf, a snowman from the movie.

“I’d say overwhelming, that’s the first thing that comes to mind,” Travis Rhoden said about his daughter being granted a wish. “Kind of hard to believe, honestly. It still hasn’t quite sunk in that we’re doing it.”

The Make-A-Wish representatives that the Rhodens were talking with wanted to make sure the wish that was granted was truly something Lucy, and not just her family, wanted. That was difficult.

“At the time, Lucy didn’t really have a lot of expressive language,” her mom, Melissa Rhoden, said. “So trying to figure out what she wanted her wish to be was hard.”

Lucy is not completely non-verbal, but she’s also not capable of telling anyone, “Hey, this is what I want.” That made the process challenging. The representatives asked Lucy to draw a picture of her wish. That didn’t work out. They showed her some pictures and asked Lucy what she liked best. That didn’t work either.

“Then they started playing with her and spending more time with her,” Melissa said. “And they noticed that the things she liked were Minnie Mouse and Elsa and Play-Doh.”

Those likes, minus the Play-Doh, led the Make-A-Wish representatives and the Rhodens to the Walt Disney World decision.

Since the decision, Melissa and Travis have worried if the choice was the correct one. Maybe this was something they wanted for their daughter instead of something their daughter wanted.

But in the time since choosing Disney World, Lucy’s language skills have improved. Lately, she’s been talking about meeting Elsa.

“Then it was like, ‘Yes, we did it right,'” Melissa said. “That was a huge relief.”

Lisa Robinson and her daughter, Ameiya Robinson, will be going to Disney World with the family. Lisa is an instructional assistant at Bessie Weller and has worked with Lucy the past three years. After the first year, Lucy’s kindergarten year, the Rhodens asked Lisa if she would continue to work with their daughter over the summer.

“Ever since then, I’m attached,” Lisa said.

Ameiya, a freshman at Robert E. Lee High School, has also become attached to Lucy. At the party, she spent more time with Lucy than anyone else, feeding her ice cream, placing a crown on her head, helping her in and out of her chair.

“Lucy is almost like a little sister,” Ameiya said. “She’s always coming over to our house, we’re always at her house. Our families have gotten, like, really close.”

The Robinsons have been to Disney World before, but they’re excited about the opportunity to return with Lucy and her family.

“This is going to be a whole different experience seeing Disney,” Lisa said. “Because we’re going to get to see it from her point of view. It’s going to be different for us to see it the way she sees it. I can’t wait to see her eyes light up when she sees Elsa.”