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Craniosynostosis Awareness Month with Shelby

For Craniosynostosis Month, Speak Now for Kids spoke with Shelby about her experience growing up with craniosynostosis. Shelby is a songwriter/singer, and her original songs have topped the European charts. She has opened for the acapella group Pentatonix and Disney Channel star Sabrina Carpenter. If you just met Shelby, you would think that this talented artist has it all. But, things haven’t been easy for her.

As a young child with craniosynostosis, I spent a lot of time at Johns Hopkins University Hospital in Maryland and JFK Medical Center in New Jersey. Craniosynotosis is a brain disorder where the bones of my skull closed prematurely as an infant. I received multiple cranial surgeries to create extra space in the skull for normal growth. The surgeries created soft spots on my head where portions of my skull are missing. Everything from the weather to how quick I’m moving can cause pain and restrict my physical activities for the day. There were many aspects of life that I didn’t quite understand or think were fair. For instance, I’ve always loved playing sports, but I had to wear a helmet in order to play lacrosse and volleyball — I sure let that get to me.

I’m now in my 20s, and when I look back I’m happy to have experienced craniosynostosis because it has shaped me into who I am today. I’ve been very blessed to have the support of family and friends who have been there for me every step of the way. Their encouragement motivates me to increase awareness for craniosynostosis. I’m lucky enough to have a platform as a performer to educate and advocate for craniosynotosis awareness. I want to use this opportunity to reach families who may be dealing with their own cranio-chapters and let them know that they are not alone.

I’ve become very passionate about sharing my story to increase awareness of craniosynostosis and advancing children’s health. There are incredible organizations full of wonderful people who I have been lucky to get to know such as the Children's Hospital Association, Mt. Washington Pediatric Hospital and the Cranio Care Bears.

Remember, life is a novel full of themes unknown, but it is a beautiful tale full of laughs and helping hands along the way.


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