Freya’s Story

Less than 100 people worldwide have the genetic condition called Bainbridge-Ropers Syndrome. Five-year-old Freya is one of them.

“Freya did everything she was supposed to until she was about 6 months old,” says Angela, Freya’s mom. “As she grew older, she was consistently a year behind in developmental milestones like sitting up, crawling, and walking, and she never started talking.”

Bainbridge-Ropers Syndrome causes global developmental delays that impact Freya’s ability to move and speak. Despite these challenges, Freya is learning ways to share her sweet personality and active mind as well as improve her strength and coordination through occupational, physical and speech therapy at ChildServe.

While Freya made progress in many areas, some of the most exciting milestones were goals she met quickly in Speech Therapy with therapist Lindsay Ketels.

“When I started working with Freya she knew many words in sign language, but she wasn’t using them to communicate on her own. She only used them when prompted,” says Lindsay.

Lindsay began using the Picture Exchange Communication System (PECS) with Freya and continued practicing her sign language skills. PECS teaches children to tell others what they want or need by using pictures printed on flashcards. As a child learns new skills, the program gradually teaches more complex sentences, questions, and descriptions.

“Bringing both PECS and sign language into Freya’s therapy plan was a great fit with the support we already provide at home,” says Angela.

After several months, Freya’s communication skills began to blossom.

“One day, Freya made a sudden connection. She began using signs to ask for help or say, ‘more,’ or ‘all done,’” says Lindsay. “Through PECS, she started to combine pictures to form sentences and request things she wanted to play with, or songs she wanted to sing.”

Freya also began learning to use an electronic communication device that “speaks” a word out loud when Freya presses a picture of that word. The device helps her connect with the people in her life who do not know sign language. It also allows her to access her growing vocabulary more quickly than if she was using a binder with printed pictures.

Along with watching her build skills she can use right now, Freya’s parents are excited to see her gain tools she can use throughout her life.

“Freya is amazing, and speech therapy at ChildServe has opened up new ways for her to share life and personality with others,” says Angela. “Along with allowing Freya to communicate with her siblings more easily, therapy is setting her up to thrive at school and connect with classmates and teachers. It’s a wonderful feeling to watch her build independence and skills for the future.”

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ChildServe improves the health and well-being of nearly 4,500 children each year through specialized clinical, home, and community-based programs and services. We serve children with developmental delays, disabilities, acquired injuries, and other special healthcare needs.

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