Help Wynnie Reach Life-Changing Care at Cincinnati Children’s

As Wynnie’s mom, it’s hard to put into words the journey she has faced since the day she was born.

From struggling to breathe as a tiny baby due to laryngomalacia, to severe feeding challenges, developmental delays, and countless medical appointments searching for answers — Wynnie has shown more strength than anyone should ever have to.

After years of questions, genetic testing revealed that Wynnie has a rare genetic condition called Coffin-Siris Syndrome, caused by a change in the ARID1B gene.

This diagnosis finally gave us answers, but it also showed us just how complex Wynnie’s needs are.

One of Wynnie’s biggest challenges is her severe GI and motility disorder, which has impacted her daily life and caused ongoing struggles with eating, digestion, and comfort. We have spent years searching for specialists who truly understand the complexity of children like Wynnie.

Our next step is Cincinnati Children’s Neurogastrointestinal and Motility Disorders Program — a specialized program that may provide the advanced evaluation, testing, and care that could be life-changing for Wynnie.

The reality of rare disease is that the care a child needs is often hundreds of miles away from home. We are preparing for travel, lodging, meals, and medical-related expenses while navigating the uncertainty of what insurance may or may not cover for out-of-state care.

The fundraising goal we have set is a starting amount while we wait to hear back from Cincinnati Children’s financial department with an exact estimate for the procedures, testing, and care Wynnie may need. As we learn more about her treatment plan and costs, we will update our goal accordingly.

We are asking for help not only to get Wynnie closer to the specialized care she needs, but also to bring awareness to a condition most people have never heard of.

If you are able, please consider donating. If you cannot donate, sharing Wynnie’s story and this fundraiser can make an incredible difference. Every share helps us reach someone who may be able to help.

We are fighting for Wynnie — and for every child with Coffin-Siris Syndrome who comes after her.

Thank you for helping us spread awareness, share her story, and give Wynnie the chance to receive the care she deserves.