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Beyond the Diagnosis art exhibit raises awareness for kids with rare diseases

National, traveling art exhibit visits Children’s Hospital of Richmond at VCU.

paintings of pediatric patients line a hallway The art show aims to spread awareness about rare childhood diseases. (Children's Hospital of Richmond at VCU)

By Kate Marino

A traveling art show titled Beyond the Diagnosis made a stop in Richmond last month to raise awareness, educate, and inspire research and innovation of treatments for children living with rare diseases. VCU Health Arts in Healthcare organized and set up the display in the Children’s Tower Sky Lobby.

“There are 7,000 rare diseases,” said Tiffany Kimbrough, M.D., pediatrician and medical director of CHoR’s complex care clinic. “Teaming up with Beyond the Diagnosis for this art exhibit at CHoR has allowed our patients with rare diseases to see that they too are beautiful and not alone on their journeys. And those families and visitors who aren’t impacted by rare diseases can learn more about them.”

More than 50 people came out to an event to view the professionally painted portraits of children with a variety of rare diseases. They also shared in the unveiling of the latest addition to the show, a portrait of a CHoR patient painted by local artist Nathalie Godin.

Phillips family stands with CHoR team members around painting

The Phillips family and CHoR team members share their excitement when the painting of patient Jack Phillips was unveiled in April. (Children's Hospital of Richmond at VCU)

The patient is 3-year-old Jack Phillips, who has Warsaw breakage syndrome and has been seeing Kimbrough in the complex care clinic for the past year.

“These paintings are unifying and comforting for everyone in the community,” said Jack’s mom, Sierra, as she shared her family’s journey from diagnosis to finding the best care for Jack and connecting with other Warsaw breakage syndrome families throughout the world.

“Art has a powerful impact on human emotions and connections,” said Alexis Shockley, manager of VCU Health Arts in Healthcare. “We use art to create a calming, inspirational atmosphere throughout our facilities. Inviting traveling exhibits such as this one into our space allows us to connect with patients in unique ways.”

The Beyond the Diagnosis exhibit was one of several events commemorating the first birthday of the Children’s Tower, and more than 100 years of caring for kids with medical needs from common to complex at CHoR.