Exhibit of children’s portraits hopes people see Beyond the Diagnosis

4-year-old girl with sickle cell disease featured in traveling art exhibit

Andrea Lobo, PhD avatar

by Andrea Lobo, PhD |

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A group of people of various ages and sporting ribbons come together to raise awareness.

A portrait of 4-year-old Kynnedi Sturges, who is living with sickle cell disease (SCD) in Camden, Arkansas, was unveiled last week in an international art exhibit by the nonprofit Beyond the Diagnosis.

Displaying artworks of 40 children with rare diseases, the exhibit is being hosted by Arkansas Children’s from Sept. 20 to Oct. 27, in three different locations.

Kynnedi’s portrait is featured at the Thea Foundation’s gallery, in North Little Rock, through Oct. 26. The gallery is open to the public Monday to Thursday, from 9 a.m. to 5 p.m., or by appointment. The foundation is an Arkansas nonprofit organization that promotes the importance of art in education and development.

At the same time, a featured collection of seven reproductions is being exhibited at Arkansas Children’s Hospital in Little Rock from Oct. 2-27.

“These are the children whose journey will be harder than most can imagine,” Marcy Doderer, president and CEO of Arkansas Children’s, said in an organization press release. “We strive to safeguard their childhood alongside our expert colleagues at all children’s hospitals nationwide.”

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Goal to raise awareness about children with rare diseases

The Beyond the Diagnosis art exhibit focuses on rare disease patients and aims to inspire the medical community to look at each patient beyond their diagnosis. The ultimately goal is to represent all 7,000 known rare diseases, with each portrait representing a single disease.

More than 50% of people with rare diseases are children, and the exhibit shows portraits of pediatric patients, who are depicted as simply being children, either wearing their favorite costumes, or performing playful activities. Despite their challenges, they are living with resilience and joy.

“The faces in the Beyond the Diagnosis gallery tell this story: Children with rare diseases are shaping their own narratives of resilience, joy and endless possibilities amid their challenges,” the release stated.

Kynnedi has the most severe form of SCD, known as SS-type, where she carries mutations in both copies of the HBB gene that lead to the production of a faulty version of hemoglobin, which is the protein that carries oxygen in red blood cells. This causes red blood cells to assume a sickle-like shape, leading to blockages of blood vessels and disease symptoms.

The Arkansas native smiled when she recognized her face painted in her favorite colors of purple and pink. Her portrait was painted by the artist Rex Deloney, from North Little Rock.

These are the children whose journey will be harder than most can imagine.

Artists donate time and talent to paint portraits

Kynnedi’s portrait will become a fixture in the show, along with a portrait of Matthew Lance, a 14-year-old Arkansas boy with a rare chromosomal disorder, whose portrait was painted by another Arkansas artist, Diana Shearon. They represent the first Arkansas children and artists to be featured in the gallery.

All other paintings were done by artists who donated their time and talent for the exhibit, which will be traveling to medical schools, research institutes, hospitals, galleries, and museums around the globe.

Beyond the Diagnosis seeks to unite art and science to educate and raise awareness for research and innovation in treatments for children with rare diseases.

“We believe art not only leaves a powerful and lasting visual imprint but creates a unique connection for the viewer,” the organization stated on its website.