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CountrySide/Cascades
Profiles in DYNABy Kathie Felix
Early July brings a variety of wonderful celebrations to eastern Loudoun — fireworks, patriotic events, concerts — and an annual Summer Chill created for a special group of heroes, the young members of the Dysautonomia Youth Network of America (DYNA).
The DYNA kids and their parents navigate daily around a tricky medical condition known as dysautonomia. Basically, this means that the youngsters have an unpredictable autonomic nervous system. Since the autonomic system controls the countless subtle workings of the human body, things like standing, sitting, eating and just hanging out with friends can require extra thought and patience to avoid or minimize dizziness, vision problems, breathing and temperature irregularities, exhaustion and, in some cases, fainting.
This year, more than 170 kids and their parents came to Sterling to share coping skills, learn the latest information about the condition from medical experts and, most importantly, to just plain have fun for three days with others who completely understand their unique situation.
Two of the attendees, Josie Annetta and her 18-year-old daughter, Stephanie, literally came from the other side of the globe — Melbourne, Australia — to meet face to-face with a world of friends they had previously known only online.
“This is the best medicine,” Josie said. “Meeting the girls —and all of the shopping — is wonderful. Stephanie is pretty shy, but everyone here is very welcoming. This is a great bunch of people.”
Stephanie, a nursing student, plans to start an Australian version of DYNA.
An Australian thread ran through many conversations throughout the weekend as attendees talked about Greg Page, the lead singer of the Australia-based children’s group, The Wiggles. Page, also known as the Yellow Wiggle, had given up his role as the group’s lead singer because of his own battle with orthostatic intolerance, a form of dysautonomia. For many of the kids, this was a hopeful sign that their condition might become better understood, recognized and accepted.
The last night of the Summer Chill included a “Dizzy Prom” held because many of the high school students miss their own proms due to illness. The recommended dress for the evening was formal wear or pajamas. The party included a catered dinner, live music, a strolling magician, and elegant “goody” bags.
The hit of the evening was a professional photography studio set up to catch memories of a good time with some seriously (and some hilariously) posed images of family and friends.
I talked with many wonderful people that Saturday night, people who have come up with a million ways to make the most of a challenging situation. Debbie Dominelli created DYNA nine years ago with the help of family members when her daughter was severely ill and diagnosed with dysautonomia. Ron and Lin Gerdel of Naples, Fla., and their son connect DYNA to a foundation that provides an annual donation of some of the organization's operating funds. Jerri and Bill Smeltzer of Chillicothe, Ohio, welcome a number of foreign exchange students into their home so that their daughter can experience the world and its cultures even though travel would be difficult for her.
At the end of the evening, I watched a small group of prom-goers as they joked around and pitched glass marbles into some of the centerpiece vases. The scene reminded me that there are too many things in life that can be taken for granted. For these kids, this inconsequential late evening activity was the last piece of a once-a-year opportunity to bond with some of the best friends they have, friends who were headed back to homes around the country (and the world) the very next morning.
Some facts about dysautonomia and orthostatic intolerance: According to Vanderbilt Medical Center, orthostatic intolerance affects 500,000 Americans and causes a wide range of disabilities. Dr. Hasan Abdallah works with children with dysautonomia at the Children’s Heart Institute (childrensheartinstitute.org) located in five areas in northern Virginia, including Sterling. The Dysautonomia Youth Network of America (DYNA) is online at www.dynakids.org.
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