Children with rare diseases know a lot about some pretty grown-up topics. Many can tell you how doctors treat their life-altering symptoms while in pre-school. Others can recall lengthy therapy names before their first spelling test. Some can share statistics that prove just how unique they truly are while their peers are still learning to count.
Arkansas Children’s, a leader in primary and specialty care, is teaming up with nonprofit Beyond the Diagnosis to make sure the beauty of childhood itself stays at the heart of the national conversation about rare diseases. They are showcasing 40 artworks of children with rare diseases with Thea Foundation, an Arkansas non-profit that advocates for the importance of arts in education and development.
This week the organizations unveiled the portrait of 4-year-old Kynnedi Sturges, who is thriving and keeping her care team on their toes as she lives with sickle cell anemia type SS. The Camden, AR native was all grins when she recognized her face in cool purples and pinks as her portrait went up as part of the internationally traveling exhibit. Kynnedi wanted everyone in attendance to know those same colors are her favorite when she’s building with blocks and shaping modeling clay.
Her portrait by North Little Rock artist Rex DeLoney will become a fixture in this show, alongside a portrait of 14-year-old Matthew Lance, a Bella Vista, AR teen who has a rare chromosomal disorder. His portrait was painted by Arkansas artist Diana Shearon. They are the first Arkansas children and Arkansas artists to be featured in the gallery.
Kynnedi’s and Matthew’s faces shine a light on the rare disease experience, reminding people that more than 50% of people affected by rare disease are children.
“Arkansas Children’s cares for and supports thousands of children every week. They are children who need us only briefly to treat an illness or injury. And they are children who rely on our extraordinary team to search for an elusive diagnosis, to explore options for treatment, to advocate for advances in medicine that might someday lead to their cures,” said Marcy Doderer, FACHE, President and Chief Executive Officer of Arkansas Children’s. “These are the children whose journey will be harder than most can imagine. We strive to safeguard their childhood alongside our expert colleagues at all children’s hospitals nationwide.”
Beyond the Diagnosis highlights childhood with playful depictions of children simply being children. Whether in superhero costumes or mermaid skirts, surrounded by tricycle wheels or sunflower blooms, 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.
Beyond the Diagnosis opens at Thea Foundation in North Little Rock on Monday, Oct. 9 and runs through Thursday, Oct. 26.
Gallery Display at Thea Foundation in North Little Rock (open to public)
401 N. Main Street, North Little Rock, AR 72114
Experience 40 original breathtaking portraits
Oct. 9 – Oct. 26 (Monday – Thursday from 9 a.m. – 5 p.m., or by appointment)
archildrens.org/beyondthediagnosis
