Ruby’s Runway Raises Money For Williams Syndrome
Club hosts dress resale fundraiser, with plans for more
On Sept. 17, the Ruby’s Runway club hosted a dress resale fundraiser at Preston Road Church.
Ruby’s Runway was started by seniors Campbell Nelson, Tatum Thomason, Tyler Singleton and Ella Scott Singleton. The club was created to fundraise for Williams Syndrome, which is a developmental disorder that their family friend Stephanie Bolton’s adopted daughter, Ruby, was diagnosed with.
“We decided to make the club in April I believe and we just decided that we wanted to start a club that would help kids like Ruby because all of us just love her,” Nelson said.
The clubs founders initially came up with the idea of a dress resale event for a unique way of raising money and something timely for upcoming school events.
“We wanted to come up with a way to raise money, we got to thinking and wanted to do something creative, so why not a dress sale?” Ella Scott said. “We thought it would be a good idea for people to be able to get dresses for homecoming and raise money.”
Ruby’s Runway collected 500 lightly-used dresses from the community and sold them at the event. Five days before the campaign ended, the club also passed their goal of $20,000. Donations to the fundraiser goes to the Williams Syndrome Association, which then uses the money for awareness and working on research.
“I hope we keep this club going every year, it’s the word and awareness that’s really amazing and raising these funds is so [amazing] for families,” Bolton said.
Ruby, whose name inspired the name of the club, was adopted and at 9-months-old she was diagnosed with Williams Syndrome. After they came up with the idea for the club, the idea was shown to Bolton, who described it as being a surprise.
“It was just the most amazing thing ever, I just love those girls,” Bolton said.
Ruby’s mild neurological effects differ her from other children, making her a little less social and facing delays with her processing.
“Her physical understanding took a long time. Sometimes it’s something she can’t see. For a while, she’d get down on the ground to walk into a doorway like it was two different floors, like [if there was] a threshold,” said Bolton. “I don’t know what she sees compared to what you and I see, but she saw something differently that caused her to get down on the ground and crawl.”
The students first found out about Ruby’s condition through their mothers, who are friends from college.
“So Ruby, her mom, is my moms’ best friend, so we went through the adoption process with her, and a couple months after Ruby was born, it was found out that she was diagnosed with Williams Syndrome, so we started to research and wanted to find a way to raise money for Williams syndrome,” club president Ella Scott said.
Most cases occur spontaneously and it qualifies itself as a rare disease, affecting only one in 10,000-20,000 according to the National Organization of Rare Diseases.
“At about 9 months at her checkup, when they heard a heart murmur, they sent us to a pediatric cardiologist the next morning,” Bolton said. “Usually, a lot of kids have them when they are younger, but hers was a lot stronger than what she would like, so they sent us to a doctor. She has what they called supravalvular aortic stenosis, which is a heart problem directly related to Williams Syndrome [and] it’s a lifelong condition.”
Ruby has been enrolled in KinderFrogs at TCU, a school for students with neurological conditions that cause delays to give care during the day.
“I moved from Dallas to Fort Worth just a year and a half ago so she could go to Kinder Frog school at TCU, which is a mostly down syndrome and other cognitive delayed children school,” Bolton said.
Ruby’s Runway also helped Bolton start building a network of families who have a child with the same condition.
“I don’t know anybody with a Williams Syndrome child,” Bolton said. “It’s all Down Syndrome that’s [at Kinder Frogs]. I’ve been trying to find a network of people. I haven’t really met other parents, but Ruby’s Runway put me in contact with a family from Houston.”
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