In a heartwarming initiative, Arkansas Children’s has partnered with the nonprofit, Beyond the Diagnosis, to shed light on the lives of children living with rare diseases. The collaboration aims to capture the essence of childhood, irrespective of the challenges these children face, through a mesmerizing art gallery.
Children with rare diseases often find themselves navigating complex medical terrains from an early age, becoming well-versed in medical jargon and treatments even before they master their ABCs. Yet, their spirit remains unshaken, with dreams and joys typical of any child.
This week, the organizations proudly unveiled the vibrant portrait of 4-year-old Kynnedi Sturges from Camden, Ark. Living with sickle cell anemia type SS, Kynnedi’s infectious smile and zest for life are beautifully captured in hues of cool purples and pinks – her favorite colors. The portrait, crafted by North Little Rock artist Rex DeLoney, joins the gallery alongside a portrayal of 14-year-old Matthew Lance from Bella Vista, Ark., painted by Diana Shearon. Both Kynnedi and Matthew are the first from Arkansas to be featured in this traveling international exhibit.
With over half of those affected by rare diseases being children, such initiatives are crucial in raising awareness and empathy. Marcy Doderer, FACHE, the CEO of Arkansas Children’s, emphasizes the hospital’s commitment to these children. She remarks, “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.”
The artworks in the Beyond the Diagnosis gallery are a testament to the boundless resilience and joy of these children. From superhero costumes to scenes of everyday play, the paintings echo a singular narrative – children with rare diseases, like all children, are bursting with potential, dreams, and a unique story to tell.
The gallery is set to open its doors to the public at Thea Foundation in North Little Rock from October 9 to October 26.