BWS survivor Jessica Stokes awarded medal, donation from Just for Kix dance group

Last month, Jessica Stokes was awarded the Hero Medal by her dance group Just for Kix in recognition of her battle with Beckwith-Wiedemann Syndrome, a condition she has lived with since birth.

Beckwith-Wiedemann Syndrome, or BWS, is an overgrowth disorder, usually present at birth, characterized by an increased risk of childhood cancer and certain congenital features.

"The JFK hero medal was awarded to Jessica for her strength, courage and positive attitude as she faces the challenges of living with BWS," said Donna Fort with Just for Kix.

Jessica was diagnosed with the syndrome shortly after birth, but her mother, Julie Stokes, said she knew before her doctors did.

Julie said that all she could see at first was that she had an enlarged tongue and dark red birthmarks on her face. After doing some research, she found the similarities between her daughter's symptoms and BWS.

"I asked the doctor, 'Do you think its Beckwith-Wiedemann syndrome?'" Julie said. "They said they would have to do some research on the syndrome. They didn't know what it was."

BWS is a rare condition, with an estimated occurrence of one in 13,700 people.

It didn't take long before the family was in the midst of surgery and blood work. The last surgery that Jessica had to go through was when she was 22 months old, and required that the family fly to a hospital in St. Louis that specialized in the type of surgery needed.

"That was the worst surgery she's had to go through," Julie said.

Jessica, now six years old, has not had to face any surgeries since then. However, with the syndrome's increased risk of childhood cancer, she does have to get blood work and see her doctor in Denver about every three months.

"We will have to keep doing blood work until she's about 10," said Julie.

Adults with BWS see very few, if any, syndromic features, and are able to grow and develop regularly without need of constant screening.

Along with the Hero medal, Just for Kix also donated $1,250 from the show they conducted in March to the Stokes family to help with medical expenses.

"We started the community fundraisers in 2010 and have raised and donated over $20,000 to families, individuals, schools and non-profits in the community," Fort said. "It's a great opportunity for the girls to show support for one another and give back to the community they dance in."

Jessica has been dancing with Just for Kix for three years now. She lives in Sidney with her dad, Greg Stokes, mom Julie, her brother Jonathon and sisters Taylor, Natalie and Samantha.