Sierra and Byond the Diagnosis

For children with rare and complex diseases, interacting with multiple medical professionals is part of life. There may be frequent hospitalizations, multiple medical visits, and appointments for various therapeutic services.

Sometimes, it can feel like the diagnosis is taking center stage.

The global program, Beyond the Diagnosis, seeks to shift the narrative and put a face to the more than 7,000 rare diseases that are currently identified. In this program, various artists donate their time and talent to paint portraits of children with rare and complex diseases. Each portrait represents one rare disease.

The goal of this art exhibit is not only to raise awareness about rare diseases and inspire research and innovations for treatment, but to remind the medical community – and all individuals – that each patient is more than their diagnosis. 

When Better2gether mom, Sierra, first heard about Beyond the Diagnosis, she applied for her children to have their portrait painted. Her three-year-old son, Jack, has a rare and complex disease. His twin sister, Charlotte, is a carrier. They were admitted to the program, and now Jack and Charlotte’s portrait has been permanently part of this traveling exhibit since April of this year.

In addition to applying for her children to be included, Sierra wanted to bring this remarkable exhibit to the Children’s Hospital of Richmond (CHoR) at VCU.

“Bringing Beyond the Diagnosis to Richmond was important to me,” shares Sierra. “This exhibit educates the broader community about rare diseases in a unique way. Some rare diseases are visible, but some are not.”

The portraits were displayed in the CHOR Pavilion Sky Lobby throughout the month of April. Included in this display was the portrait of Jack and Charlotte. “Many Better2gether families were able to see the portraits and interact with them,” she shares.

“Art is a medium that can speak to people,” says Sierra. “Kids can see other kids who look like them and feel like they’re not alone.”

Sierra encourages parents of children with rare and complex diseases to consider applying to be part of the exhibit: “If your child has a genetic syndrome that isn’t represented, apply!”

“It has been an amazing experience,” Sierra shares. “The kids can live on forever as part of this exhibit; and people all over the country and the world will get to really see who they are.”

To view the gallery and learn more, visit:  beyondthediagnosis