Rare disease doesn't curb girl's creativity
News-Topic - 3/1/2020
Feb. 28--Deanna Lawson doesn't speak, but she loves to create music and to feel it flow around her. Her hands have limited dexterity, but at home she still manages to play the keyboard, drums and anything else she can to the best of her ability.
Deanna, 11, was born with Klippel Feil Syndrome, a rare disease that restricts her mobility. She is also autistic and nonverbal, but she doesn't let that keep her away from her classmates at Gamewell Elementary School or from taking part in the school chorus, forming wordless lyrics with her mouth and keeping the beat alongside her fellow musicians.
Her music teacher, Mary Katherine Taylor, said that when they're all on stage or practicing together, Deanna lets the music come to her in her own way.
"She is a loved member of our group, and she has buddies who help her on and off the stage," Taylor said. "She doesn't typically sing words, but she can match the pitch a lot of times. She just is happy like any of the other kids. Music is really a powerful thing."
Klippel Feil Syndrome is a genetic birth disorder that affects the heart, lungs, kidney, spine, muscles, limbs, vision and hearing and causes chronic daily pain.
Deanna's mother, Janey Porter, said that everyday life is a battle for Deanna, who struggles with stiffness every morning and needs a little help getting dressed. But once she gets her momentum going, Porter said, there's no stopping her.
"She loves going to school and she loves learning," Porter said. "The school has been really great about it and has been such a supportive community. She's super smart and really good with computers."
Little is know about Klippel Feil, often referred to as KFS, but Deanna and her family are determined to draw something positive from the condition and use Deanna's story as a way to increase awareness, beginning at home with her classmates at Gamewell.
Saturday is Rare Disease Day, a national day of awareness about diseases like KFS -- which affects roughly one-in-40,000 people. On Monday, Porter visited the school and talked to the students about KFS to give them a window into Deanna's life. She said that awareness is important not only for the larger fight against diseases like KFS but for individuals who struggle every day and who long for more understanding from the people around them.
"We really just want to encourage people to not be afraid to ask questions," Porter said. "Lots of people with special needs want to answer questions so that people can understand what they are going through."
Deanna has already endured multiple heart, eye and hip surgeries, among many other treatments, and her mother said that she has more procedures on the horizon. She has multiple specialists to help her manage the physical symptoms of her disease, and she makes frequent trips to the Children's Hospital of Philadelphia, where her main KFS doctor is.
But Deanna has other appointments closer to home that she keeps just as regularly. She takes art classes with Charlie Frye at Folk Keeper Gallery & Antiques, where she experiments with different art forms and mediums alongside a variety of classmates, which Porter said is great for her socialization and is just one more way for her to feel like exactly what she is: a kid.
"Charlie's classes are always a mix of kids -- some with special needs and some not -- so it really helps Dee, who loves to make friends," she said. "She loves to paint and to draw and Charlie says she's a really good sculptor. We're so grateful to
Reporter Garrett Stell can be reached at 828-610-8723.
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