LITTLE ROCK, AR. (Oct. 5, 2023) – 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, Ark. 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, Ark. 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 percent 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 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)
About Arkansas Children’s
Arkansas Children's is the only healthcare system in the state solely dedicated to caring for Arkansas' more than 700,000 children. The private, non-profit organization includes two pediatric hospitals, a pediatric research institute and USDA nutrition center, a philanthropic foundation, a nursery alliance, statewide clinics, and many education and outreach programs — all focused on fulfilling a promise to define and deliver unprecedented child health. Arkansas Children’s Hospital (ACH) is a 336-bed, Magnet-recognized facility in Little Rock operating the state’s only Level I pediatric trauma center; the state's only burn center; the state's only Level IV neonatal intensive care unit; the state's only pediatric intensive care unit; the state’s only pediatric surgery program with Level 1 verification from the American College of Surgeons (ACS); the state’s only magnetoencephalography (MEG) system for neurosurgical planning and cutting-edge research; and the state's only nationally recognized pediatric transport program. Arkansas Children’s is nationally ranked by U.S. News & World Report in seven pediatric subspecialties (2023—2024): Cancer, Cardiology & Heart Surgery, Diabetes & Endocrinology, Nephrology, Orthopedics, Pulmonology and Urology. Arkansas Children’s Northwest (ACNW), the first and only pediatric hospital in the Northwest Arkansas region, is a level IV pediatric trauma center. ACNW operates a 24-bed inpatient unit; a surgical unit with five operating rooms; outpatient clinics offering over 20 subspecialties; diagnostic services; imaging capabilities; occupational therapy services; and Northwest Arkansas' only pediatric emergency department, equipped with 30 exam rooms. Generous philanthropic and volunteer engagement has sustained Arkansas Children's since it began as an orphanage in 1912, and today ensures the system can deliver on its promise of unprecedented child health. To learn more, visit archildrens.org.
About Beyond the Diagnosis
The Beyond the Diagnosis art exhibit’s focus is the rare disease patient. Artists have donated their time and talents to paint rare disease patients for this groundbreaking exhibit. Each portrait represents a single orphan disease. Our goal is to put a face to all 7,000 rare diseases. This beautiful exhibit is traveling to medical schools, research institutes, hospitals, galleries, and museums around the globe encouraging the medical community to look “beyond the diagnosis” to the patient.
About Thea Foundation
Thea Foundation’s mission is to advocate the importance of the Arts in the development of our youth. Three programs are implemented statewide to support this mission—Thea Scholarships, Art Closet and Arts Reconstruction. Since 2002, Thea Foundation has awarded more than $3.2 million in scholarships to Arkansas students and provided more than $2.5 million in art supplies and creative materials to underfunded schools through our Art Closet program. In addition, Arts Reconstruction is our focused effort to help teachers receive professional development and supplies to enable a better platform to advance in their own careers and schools. Our collective aim is to enrich young minds through the power of the Arts. Named for the daughter of Paul and Linda Leopoulos, Thea Foundation carries on the legacy of Thea Kay Leopoulos, who thrived academically, socially and emotionally thanks to her artistic pursuits. For more information about Thea Foundation, visit theafoundation.org.
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