The Connection

Team “Jamie’s Joggers” is getting ready to lace up their shoes this Halloween to support Potomac‘s Jamison Eberstein, a 5-year-old born with a rare terminal disorder called Cockayne Syndrome (CS). “Jamie’s Joggers” are also on a mission to make a difference by raising funds for Children’s National — the hospital where Jamie spent 31 days last summer receiving inpatient treatments.

Jamie’s parents, Nikki and Jason Eberstein wish to support the hospital that has been so good to them. “Seeing Jamison cross the finish line at last year’s Race was one of my proudest moments,” said Nikki Eberstein.

Jamison was born with a rare genetic disease called Cockayne Syndrome — a terminal disease with no cure or treatments. In Nikki Eberstein’s words: “Being told that your child has a limited lifespan, and there is nothing you can do to help her, is the most powerless feeling in the world. As her mother, I choose to fight; fight for Jamie, fight for a cure, and fight for all the other families who are affected by this devastating syndrome.”

“We were at Children’s so much that most of the staff knew us by name. They were fantastic to us and to Jamie,” said Jason Eberstein. “We are so fortunate to have a world-renown hospital with cutting-edge research so close to us. We require all kinds of pediatric specialists including a gastroenterologist, a neurologist, endocrinologist, radiologist, physical medicine physician and more. Dr. Adeline Vanderver, director of the Myelin Disorders Clinic at Children’s National was particularly helpful and wonderful.”

Jamie loves dolls, coloring, everything princess, clothes, and playing with her brother and sister, Jackson and Grayson. She is nonverbal but is a master at making sure she is understood, either through facial gestures, body language or the use of an iPad. She requires a feeding tube and nine therapies a week — PT, OT and speech. One of her favorite things is cuddling with mommy and daddy.

“She is a joy,” said Jason Eberstein. “She has a zest for life — and we want her to maintain her exuberance. All three of our kids will enjoy the upcoming race on Halloween. They have a lot of games for the children and Dr. Bear, the Children’s National Hospital mascot, will be at the race. There are expecting more than 6000 runners this year.”

Cockayne Syndrome is a rare degenerative disorder which causes premature aging, growth failure, impaired development of the nervous system, photosensitivity, eye disorders and hearing loss. A child with CS may only live to become an adolescent or young adult. The cause is related to both parents carrying a defective gene — and only one child out of a million is born with CS. There are only 50 children in the U.S. with CS — and only 200 in the world with this diagnoses. It is difficult to diagnose and many times is mistakenly diagnosed as cerebral palsy.

The Race for Every Child is important to the Ebersteins — as is fundraising for the rare disorder affecting their daughter. “We have 30 people on our team and we have raised $2,500 for Children’s National,” said Nikki Eberstein. This summer, she planned an event to fund research for Cockayne Syndrome. The Butterfly Bash, held at Woodmont Country Club, raised more than $175,000. “There is no funding, no treatment, no pharmaceuticals and no cure,” she said. She wanted the event to be a celebration with lights, music and wonderful food. “This is an incredibly sad disorder, and I don’t want this to be sad,” she said.

The “Race for Every Child” was originally planned for Oct. 3, but was rained out. Now it will be held on Halloween from 7 a.m. – 12 p.m. and everyone is invited to dress in costume for the race. This third annual 5k run/walk and Kids’ Dash will start at Freedom Plaza in downtown Washington D.C. The day will include pre-race activities at 7 a.m., the 5K at 8:45 am and the Kids’ Dash at 10:15 am. There will be a Kid’s Area with sport inflatables, mini-golf and Halloween arts and crafts.

“There’s nothing that compares to the feeling of crossing the finish line at the Race for every Child,” said Race Co-Chair Casey Seidenberg. “It’s a time to celebrate, express gratitude and have fun. But we know the finish line is just the beginning. Together as a community we can do more. We can give more children the chance for a healthy life. That’s what the Race is all about.”

Registration is now open at www.raceforeverychild.org. Participants can sign up an as individual, create or join a team, or donate. The half-day event features a range of family-friendly activities. Sponsorships are also available; contact Race Director Ashley Husich at ahusich@childrensnational.org.