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Every Day We Shine | Community Spotlight: Ella Rhyne

To help support Ella, the Rhynes, and more families like theirs, Babiators will be donating 15% of all sales proceeds to IDefine from January 24th, 2023, to January, 29th, 2023. You can also donate directly to IDefine here

At Babiators, our core mission is, and always will be, to protect, inspire, and support kids and parents so they can live healthier, more joyful lives. We’re so excited to finally introduce a project that we feel rings true to this, and one that we hold especially near and dear to our hearts: The Every Day We Shine Project. 

About The Every Day We Shine Project

Throughout this series, we will be featuring little ones who aren’t afraid to let their light shine bright and are already making a big impact on the world around them. By sharing their stories, we hope to help inspire our global community and support these children, their families, and others who may have shared experiences. 

We are so excited to introduce our very first community spotlight, Ella Rhyne, and have her kick off this new series! This amazing girl has left a mark on our hearts, and is sure to leave one on yours, too.

Keep reading for more about Ella and her story! 


Community Spotlight: Ella Rhyne & IDefine

Meet the Rhynes: an extraordinary family of five and leaders of their community, businesses, and their own non-profit organization, IDefine. At just four years old, their amazing daughter, Ella, is a wave-maker and inspiration in her own right. 

When Ella was born in 2017, doctors discovered a heart murmur that put her parents on high alert. On January 6th, 2019, just fifteen months later, Ella was diagnosed with Kleefstra syndrome. 

“The day your child is diagnosed with a rare disease is one you’ll never forget,” says Ella’s dad, Geoff, “our whole world shifted.”  For rare disease parents, the journey starts from day one. They had no idea what to expect, only that there were many unknowns to navigate. But, what they did know is that they would do anything to help their daughter. 

What Is Kleefstra Syndrome?

Kleefstra syndrome (Ks) is a rare genetic condition that affects development and is often characterized by communication difficulties, muscular dystrophy, and intellectual disability. However, there isn’t an all encompassing definition of Ks, as diagnosed individuals often experience a wide range of both symptoms and the severity of them. 

To learn more about Kleefstra syndrome, click here.



Every Day Ella Shines 

After her diagnosis, doctors told Ella's parents they weren't sure if she would be able to walk or talk. And they were right. Ella isn't just walking, she's running, forming whole sentences, and even trying new things like playing kickball with the neighborhood kids. "Ella is always out there in the mix. She’s showing us what she can do rather than being defined by her disabilities," Geoff says.

Ella also loves to sing and dance, with a few of her favorite tunes being "Stand By Me", "I Can Only Imagine" and "We Don't Talk About Bruno".  Despite the challenges Ella faces with Kleefstra syndrome, she continues to inspire and touch the lives of those around her. From her adorable dimples to her vibrant demeanor, Ella always brightens the day. 



Inspiring IDefine 

Inspired by the strength, determination, and love of their daughter, the Rhynes, along with a few other families, decided they wanted to help support more children like Ella and their families. And so, IDefine was born.

Her dad Geoff, who is now the CEO, says, "One thing about special needs children is that they don’t place judgement on others." The capitalized "ID" in the organization's name symbolizes that an individual's intellectual disabilities are not their identity. 

More About IDefine

IDefine is a nonprofit organization is committed to identifying life-changing treatments & cures for those with Kleefstra syndrome and other intellectual disabilities, while helping to building community and resources for families. 

IDefine operates around three primary pillars: community building, development of coordinated care, and research. "We will not stop until Ella and other kids like her with Kleefstra syndrome have a treatment," Geoff says.

A special thank you to Ella and the Rhyne family for sharing their story!

To help support Ella, the Rhynes, and more families like theirs, Babiators will be donating 15% of all sales proceeds to IDefine from January 24th, 2023, to January, 29th, 2023. You can also donate directly to IDefine here

Resources (IDefine)

IDefine Social Media:
Please make sure to follow IDefine on Facebook / Instagram / Twitter / LinkedIn and sign up for our newsletter to stay on top of all our news, announcements and community interest stories. 

Kleefstra Syndrome Facebook Pages
We are a global community! There are support groups set up as private, closed groups on Facebook for various regions around the world. 

Global Genes

Global Genes is a global non-profit advocacy organization for individuals and families fighting rare and genetic diseases.

National Organization for Rare Diseases (NORD)

NORD is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD’s Resource Center provides patients and caregivers with free webinars, fact sheets, infographics and other helpful materials to guide you on your journey with a rare disease.
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