FOR IMMEDIATE RELEASE
Contact:
Patrick Quinn
Director of Communications, Public Relations & Marketing
Hillsboro R-3 School District
Email: Quinn_Patrick@hsdr3.org
Hillsboro R-3 School District Invites Community to Wear Orange and Blue to Support Hillsboro Student
HILLSBORO, Mo.-- The Hillsboro R-3 School District is asking the community to wear orange and blue on Monday, Sept. 15, to support Summer Beranek, a 4-year-old student at the district’s Early Childhood Center who is living with Wiedemann-Steiner Syndrome (WSS), a rare genetic condition that affects 1 in 40,000 children worldwide.
Summer has endured six major surgeries, including open-heart surgery at just 3 months old, and has already spent 164 days in Children’s Hospital. She was also the youngest child ever diagnosed with WSS at just 10 days old.
Fun Facts About Summer:
She is the youngest child ever diagnosed with WSS, at only 10 days old.
She is one of just two children worldwide with WSS who was born with micrognathia (a recessed jaw and cleft palate), a 1 in 4 million chance.
She has undergone six major surgeries, including heart surgery, and has become a proud “heart warrior.”
About Wiedemann-Steiner Syndrome (WSS):
WSS is a rare genetic disorder caused by mutations in the MLL (also known as KMT2A) gene on chromosome 11. Clinically described in 1989 and genetically identified in 2012, WSS can lead to global developmental delays, feeding and digestion complexities, sleep challenges, unusual facial features, short stature, and other medical concerns. The condition is autosomal dominant, meaning only one abnormal copy of the gene is needed for a child to be affected.
The Hillsboro R-3 School District encourages parents, students, and community members to wear orange and blue on Sept. 15 as a visible sign of support for Summer and to help raise awareness about this rare syndrome.
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