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Arkansas children’s art gallery celebrates children with rare diseases

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Arkansas children’s art gallery celebrates children with rare diseases

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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 Hospital recently teamed up
with the nonprofit Beyond the Diagnosis to make sure the beauty of childhood itself stays at the heart of the national conversation about rare diseases. Between Oct. 6 and Oct. 29, the two organizations showcased 40 art- works of children with rare diseases with Thea Foundation, the North Little Rock group that advocates for the importance of arts in education and development.

The Beyond the Diagnosis exhibition highlighted childhood with playful depictions of children simply being children. Whether in superhero costumes or mermaid skirts, surrounded by tricycle wheels or sun- flower blooms, the faces in the Beyond the Diagno- sis gallery tell this story: Children with rare diseases are shaping their own narratives of resilience, joy and endless possibilities amid their challenges.

During the first week of the exhibit, the group 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 smiles when she recognized her face in cool purples and pinks as her portrait went up as part of the interna- tionally traveling exhibit. Kynnedi wanted everyone in attendance to know those same colors are her favorite when she's build- ing with blocks and shaping modeling clay.

Her portrait by North Little Rock artist Rex DeLoney was a fixture during the show, alongside a portrait of 14-year-old Matthew Lance, a Bella Vista, Ark. teen who has a rare chromosomal dis- order. 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 diseases 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 chil- dren 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."

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