For the past three years, Jamison has crossed the finish line of the Race for Every Child on her own, telling her friends and family that she wanted to take the final steps without their help. The 7-year-old has a terminal neurodegenerative disease called Cockayne syndrome, which causes growth delays, learning delays, and premature aging. On a daily basis, Jamison uses a walker, hearing aids, eye glasses, and a feeding tube, but crossing the finish line at the race, she is powered by determination and inner strength.
“Seeing Jamison cross the finish line last year was one of my proudest moments,” says her mother Nikki Eberstein.
The Ebersteins’ support for Children’s National and the Race for Every Child is twofold—to show appreciation for the care Jamison has received since infancy and to fund research for rare pediatric diseases. Worldwide, only 200 children suffer from Cockayne syndrome. Through the race and other fundraisers, Nikki has raised more than $700,000 for research at Children’s National and other national institutions.
“We’re determined to provide Jamison with the best life possible,” Nikki says. “We focus on the things that she can do, instead of dwelling on things she can’t do or won’t ever get to do. The team at Children’s National helps us stay positive.”
Jamison’s care team spans many departments, including specialists in the Myelin Disorders Clinic, neurology, radiology, endocrinology, and physical and occupational therapy. In addition to caring for her health and searching for a cure, they are helping Jamison live a life full of dolls, dress-up, kids’ kitchen sets, painted nails, and playtime with her two siblings.
“So many families don’t have access to this level of care,” Nikki says. “We’re incredibly lucky to have Children’s National in our community. Anything we can do to raise awareness and support does wonders for our kids.”
In four years, the Race for Every Child has raised more than $4.3 million for expert care, groundbreaking research, and wellness programs. This year, the 5K run/walk and 100-yard Kids Dash will be held October 21 at Freedom Plaza in downtown Washington, DC. Thousands of community members will lace up their shoes to improve the health and wellbeing of children throughout the Washington area and beyond. Will you be one of them?
Visit raceforeverychild.org to learn more and sign up today. By participating in the Race for Every Child, you will make a difference for children like Jamison.