Sylvia was born with a very rare genetic condition called USP9X Related Disorders. This has caused global developmental disabilities and autism, as well as a variety of other medical conditions such as heart defects and a submucosal cleft palate. Despite spending much of her first year hospitalized with surgeries and chronic pneumonia, by the time Sylvia was 18 months old she was walking with the assistance of orthotics and a posterior walker. Her expression of sheer joy when she got her walker was unforgettable!
Now, at nine years old, Sylvia is able to walk on her own, at her own pace, for short distances. She is wearing a structural scoliosis suit and hard brace to fight worsening scoliosis and kyphosis, but she doesn’t let it slow her down. Her favorite thing to do outside is be pushed in a swing. Right now, when her family goes on walks she rides some of the trip in a wagon while her younger sister rides a scooter or bike.
At school, Sylvia was introduced to an adaptive bicycle in her P.E. class and she loves it! Imagine what she could do with an adaptive bike of her own!
Variety KC partners believe every child deserves to ride a bike and knows how much Sylvia would love to ride bikes with her sister and family. Sylvia got her bike and now has a safe way to engage with family and friends and keep progressing physically. Help us to make sure every child has a bike they can ride safely – donate today at www.varietykc.org/donate Thank you!
