Casey and his sister Breanna had been ballet dancing since they were young. Even though she was younger, Breanna started first. “I used to take her to ballet lessons on the bus because my mom was working,” Casey said. “And eventually I got sucked into it. So, she and I just really fell in love with ballet.”
Both Casey and Breanna would go on to study at prestigious dance schools across the country, learning from some of the best teachers around the world. And both would pursue careers in professional ballet, at least for a while.
“It's always harder for women in ballet and there's just so many of them. And (Breanna) was talented, but nobody was like, wow, she's going to become a prima ballerina. She just danced because she just really loved it,” Casey said. “Sure, I danced because I loved it, but I was also quite competitive and wanted to be a big star.”
So, while Casey stayed in the world of professional ballet, Breanna eventually moved on to other things, including becoming a mom to three children. But even though she’d left the world of professional dance behind, she never lost her love for it. “She was doing a lot of flamenco and salsa and bachata,” Casey said. “She never stopped dancing. She just stopped pursuing it professionally.”
Time passed and Casey retired from professional dancing as well, but painful circumstances would bring brother and sister back together for one more dance together.
“(Breanna) always made a point every year of coming to Europe to visit me and also to do her own travels,” Casey said. “We were doing a road trip down in the south of Spain a couple of years ago and she was just getting abnormally tired. She was just constantly feeling exhausted. Then not too long after that, she started losing control of her left foot.”
Many doctor visits followed, and a few misdiagnoses, before someone brought up ALS. In October of 2023, her worst fears were confirmed.
The formal diagnosis was made even more difficult because immediately before and after, Breanna’s ALS was progressing rapidly. “She didn't know how much time she had,” Casey said. “She just really felt a big rush to document her life and to do a couple really special projects with a couple of her closest friends and family.”
One of those projects was one last dance with Casey. And not just any dance, but a dance that would tell her story, and their story. “It was totally her idea. She really pursued it, and as soon as I thought about it, I said, ‘Yeah, this is a great idea. Let's do it.’ We put it together pretty quickly,” Casey said.
Breanna’s daughter was studying filmmaking at the time, so together with her mom and uncle, they created “Dancing with ALS: Breanna’s Story.”
“There was kind of a vague narrative, and it was really about our relationship growing up together and dancing together, but also about what she's going through right now,” Casey said. “So, there's a couple moments where she was leaning on me because now I'm her primary caregiver.”
The reaction from friends, family and the dance community has been overwhelming and has meant so much to both Breanna and Casey. “(Breanna) can barely stand now. I don't think she's going to be able to stand much longer either.” Casey said. “So, I think everybody who saw it and mentioned anything to us just really understood the significance of it. Yeah, it was just a great reaction and all of our friends and family, and everybody have just been amazing.”
Casey splits his time between his home in Amsterdam and his sister’s home in Tacoma, Washington, helping to care for Breanna with other family and friends. Breanna’s progression has also slowed, giving her an opportunity to continue to share her story and raise awareness about ALS on her active Instagram feed.
“She believes that her purpose is to help other people with motor neuron diseases. She feels like she can help in a small way, or maybe even a big way,” Casey said. “So, it gives her motivation and it gives her a purpose and motive. So yeah, now she's all about the storytelling and she's got a lot of fun ideas of things.”
Thank you, Casey, for sharing your sister’s inspiring story with the ALS community!
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Comments
I loved the determination in this story. One of my sons has ALS. He went from being an Air Force pilot to an ALS advocate overnight. I have had multiple tests all of which are negative for ALS. Still, I have loss of motor skills and speech. I go from doctor to doctor without diagnosis. I hate this disease and can’t understand why it still exists.
Hello Bob,
We are very sorry for what you and your son are going through. If you need any help at all, please find resources at https://www.als.org/local-support.
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