It took over a decade for doctors to diagnose Lauren Arena. She has a rare condition known as MEAK, myoclonic epilepsy and ataxia. It’s so rare that only 20 people are known to have it in the world. The 27-year-old was the first case diagnosed in the United States.
“It’s why she’s in the wheelchair. Because, if she tries to stand she gets these myoclonic jolts. They’re kind of like electrical impulses within her body and she shakes and she tends to go down,” said Angela Arena.
A few years ago, Angela shared her story on the Epilepsy Foundation website writing “Lauren began having symptoms at age 10.” This “debilitating condition has left her feeling very isolated” but she is a “bright, articulate 23-year-old with the same hopes and dreams of anyone her age.”
Lauren has always dreamt of being one thing — a dancer.
For the past three years, she’s practiced at least three hours every week with her partner and instructor David Dowding at the Dance With Me Studio in Glen Rock. They dance the waltz, tango, foxtrot and viennese waltz. When the two of them glide across the space together, it’s like nobody else is in the room.
When asked how Lauren feels when dancing, she said, “I can’t really describe it. I feel happy. I feel energized, like I can do this, you know? I have the power to do this.”
When Dowding first met Angela, she warned him that her only child was very touch sensitive and that in other dance studios was only held by the wrist.
“They can’t hold her by the hands, and David said ‘we’re going to hold hands,'” Angela said.
“Through a lot of hard work, anything is possible,” Dowding said.
Together they dance in professional competitions.
“This weekend we had a showcase. At the end they both stood up simultaneously,” Dowding said. “What I wanted to do with her is pull her out of her comfort zone.”
When the two are dancing together, they have a phrase: “We dance with whatever shows up.”
Lauren sings the lyrics of a song that say, “I am brave, I am proof, I am who I’m meant to be. This is me.”
A girl who was bed bound for years, who never thought she would be able to do things on her own again, is not only dancing, but walking thanks to one man who believed in her.
“It’s just trust. A bond that we have,” said Lauren.
“Seeing the work come to fruition, that’s something that’s very moving, yo know. And it’s gotten me, it’s gotten me a couple of times,” Dowding said.
A man that gave her the power to believe in herself.