“We had everyone come to my house, and Debbie came, and my parents were there,” New Paltz High School senior Juliana DeArce recalls preparing for her junior prom — a night she calls her favorite high school memory (even taking home the prize for Best Dressed). DeArce values her friends tremendously — and Debbie Regula among them, her aide since sixth grade. “I have her with me for physical reasons, but Debbie’s always been the best,” DeArce says. “She’s so easy to talk to and she makes all my friends and I happy and comfortable.”
DeArce suffers from both Mitochondrial Disease and Congenital Myasthenia, which have kept her more or less wheelchair bound throughout childhood. “They basically make me really weak and affect all of my muscles.”
However, although she sometimes has extreme difficulty walking and talking, DeArce has always made the best of her disability. She attends a camp every summer called Double H, where they have a ropes course, boating, and fishing, among other fun activities — she hopes to try skiing soon. “I’ve met a lot of awesome people there,” she says.
In addition, DeArce was accepted to the highly selective Girls’ Leadership Worldwide, a program at Val-Kill that holds two-week leadership seminars that draw girls from countries like Jordan, Israel and Iraq.
Despite the challenges she faces, DeArce has been able to maintain straight A’s throughout high school and has loved all of her teachers. Black history and photography were particularly inspiring classes for her, as well as adaptive gym. DeArce despised gym in middle school, but Coach [Mike]Vance’s class turned it around for her. “He makes me really comfortable, and I’ve been learning how to take care of my body better.”
DeArce also consistently shows genuine compassion and consideration for those who she feels struggle more than her, whether that occurs in gym or at camp. She hopes to attend SUNY New Paltz for a major in communication disorders and may pursue a master’s in occupational therapy — an experience that she says was “a lot of fun” as a kid. “I really like to help other people, and I love working with people,” she says, adding that she is still excited by all the stories she’s heard of people’s interests changing once they arrive on campus, and believes hers may be malleable as well. “Maybe I’ll find something that I like even more.”
Although she is ambitious, DeArce has witnessed the stress that work can create in the lives of those around her and hopes that she will always be able to maintain some of the carefree aspects of her current life. “I like to have me-time,” she quips.
In the future, she is also excited to break free of the rather infamous New Paltz bubble. “We’ve all been together since kindergarten, so we all know each other really well, and it gets kind of boring” — while also savoring the happy times of her senior year. “I’ve definitely been trying to soak it all in… I know once we all graduate, we’re not going to be together for a long time.”
DeArce has struggled more than most on the road to graduation, but her motivation, determination and kindness are examples that all should follow — if her hard work is any indication, she will go far.
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