Village Ultra 10-Hour Race to benefit family of teen living with PANS
NEW SALEM — Runners and walkers from across the fitness spectrum are set to rally behind the family of a local 15-year-old whose rare autoimmune disorder carries severe symptoms, prohibitive treatment costs, and high travel demands.
All funds raised at the Village Ultra 10-Hour Race on Sunday, Nov. 19, will help ease the financial burden placed on Jean Derderian and David Van Iderstine during the ongoing pursuit of medical care for their son, Burl Derderian. The teenager was diagnosed at age 10 with Pediatric Acute-onset Neuropsychiatric Syndrome (PANS), which refers to the sudden appearance of “life-changing symptoms,” including “obsessive-compulsive disorder, severe restrictive eating, anxiety, tics, personality changes, decline in math and handwriting abilities, and sensory sensitivities,” according to PANDASnetwork.org. These episodes are brought on by misdirected immune responses to infectious or environmental triggers, ultimately leading to inflammation of the brain, the PANDAS Network notes.
“When [Burl’s] symptoms are worse, he is in great distress. Even on good days, he is never well,” said Jean Derderian, offering a mother’s unique perspective on living with PANS and its crippling effects. She added that peers often struggle to identify with her son due to the nature of his illness, and coupled with his extended absences from school, he has been deprived of “a normal childhood.”
Beyond the daily demands of managing PANS, Burl Derderian has been turned away at several local OCD programs and forced to instead seek out-of-network treatment in southern Connecticut, New York and New Jersey. Consequently, the family must access expert care at significant personal expense, sacrificing monthly earnings and even withdrawing some retirement savings to cover uninsured doctor visits and costly travel across state lines.
Jean Derderian also recently accompanied her son during his two-week stay at a German hospital, where he underwent “immunity-supporting and hyperthermia treatments” to remove any further traces of Lyme disease. The infection was first discovered and treated in 2004, but a follow-up examination to Burl Derderian’s 2011 PANS diagnosis revealed that his previous condition had not been cured as initially thought, said his mother, who paid entirely “out-of-pocket” for the overseas trip.
“Financially, I’m not sure how we will manage in the future. If we continue to be denied care in network, we will have to travel to find the resources he needs. We are trying to manage on one income because he needs so much daily care,” Jean Derderian said.
Touched by the family’s ordeal, local resident and distance runner Carla Halpern conceived of an inaugural benefit to promote greater awareness of PANS and also its subset, PANDAS, which stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. The difference between the two ailments is subtle and lies in the origin of symptoms, with PANDAS caused specifically by strep bacteria and PANS by a variety of infectious agents.
Even as PANS and PANDAS gradually enter the general consciousness, Jean Derderian said medical professionals and the public at large still suffer from a lack of knowledge around her son’s condition, making this event especially timely.
“Not only is this event helping a greater good by raising awareness generally, it has also helped raise awareness locally, so that our community can better understand and support [my son], she said.
Billed as “design your own distance,” the Village Ultra begins with a 10-hour race from 7 a.m. to 5 p.m., spanning the full duration of the event, followed by a 6-hour race at 11 a.m. Drop-in participants will arrive throughout the day, able to run or walk quarter-mile laps around the common, 5K or 10K loops through the Quabbin watershed, or a combination of the three.
In order to emphasize the fundraising aspect of the race, organizers have elected not to issue prizes or T-shirts, save for customized finisher medals to those who complete a quarter mile or more. Otherwise, entrants will compete solely for the personal satisfaction gained from achieving their individual fitness goals and assisting a family in need. Plans are also in place to continue this event on an annual basis in support of similarly deserving community causes.
Between registration fees and donations, Halpern hopes to take in at least $3,000, which she said amounts to 5 percent of the approximately $60,000 needed by the family going forward.
“Sometimes, it takes a village,” Halpern said. “This race reminds us that we can help real people on a local level, bettering our community, and encouraging each other to do our best.”
Noting that her son has endured through illness for over 12 years, representing the vast majority of his childhood and adolescent life, Jean Derderian said, “I am always amazed by his strength… He has persevered through so much suffering.”
She continued, “Life has been very hard for him, and yet when his symptoms are less troublesome, it is easy to be impressed with him because he is polite, bright, creative, and fun-loving.” The teenager, whose interests include writing rap songs, drawing, and spending time with his black lab, “continues to make friends, young and old, everywhere he goes,” she said.
Swift River School nurse and race organizer Nan Mead was the first to recognize that Burl Derderian’s abnormal behavior patterns were symptomatic of a larger medical issue, one that she had only recently come to understand thanks to a piece of supplementary reading. During a visit to the fifth-grade classroom, Mead was instantly reminded of Beth Maloney’s 2009 book, “Saving Sammy: A Mother’s Fight to Cure Her Son’s OCD,” which details the events leading up to a 12-year-old’s PANDAS diagnosis.
“I distinctly remember the day I went into the class and observed his OCD that had manifested in these unusual, repetitive behaviors, like touching the ground or his shoes repeatedly before leaving a room or area of a room,” Mead said. “I immediately thought of Beth Maloney’s book.”
Later that same year, Mead and Jean Derderian attended the Northeast PANS/PANDAS Parents Association Conference in Rhode Island, where families throughout the region shared nearly identical accounts of their attempts to stay afloat. “We met several that lost their homes. Taking care of these children can make it impossible to hold down a job,” Mead said.
Much like Jean Derderian, Mead believes that the Village Ultra will play a critical role as a public-service announcement to area residents, many of whom she has found to be wholly unfamiliar with PANS and PANDAS. In addition to the Nov. 19 race, local advocates recently hosted a school screening of Tim Sorel’s documentary film “My Kid is Not Crazy,” reinforcing awareness efforts and collecting additional donations.
Jean Derderian expressed her family’s heartfelt thanks to Halpern, Mead, and others involved with the race, saying, “One of the hardest aspects of caring for a child with PANS is that it can be an isolating experience. Seeing this event come into being has helped our entire family feel supported. Knowing that our community cares about him and our family helps all of us.”
Online registration for the Village Ultra can be made through 5 p.m. today at https://www.runreg.com/the-village-ultra-10-hour. Forms are also available at the New Salem Public Library. Those planning on completing same-day registration should arrive at the common around one hour prior to their scheduled event or desired start time.
For information, Halpern can be reached at 978-490-6606.
Participants are encouraged to help reduce waste by bringing their own water or Gatorade bottles. Pre- and post-race food will be available, and live music played throughout the day.