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VALDOSTA, Ga. (WALB) - One in every 50,000 children is born with it, but for one South Georgia family, Cri du Chat syndrome is anything but a statistic.

Their child has lived with the rare disease since birth, and now they’re turning that experience into a message for other families.

Sara Smiechowski and her husband, Eugene had a change when their third child, Mathias, was born with a rare genetic condition called Cri du Chat syndrome, also known as Cat’s Cry and 5-P Minus.

After nearly 6 months of doctors’ appointments, they received the diagnosis, and that’s when their journey to find support, resources, and mobility equipment started.

“We were so alone and isolated. I didn’t know where to begin. If I can help these other families in that moment ... I firmly believe God put that in my heart and that’s what we are doing.”

Smiechowski says she never wanted people to look at Mathias as different, but her son, who is now 4 years old, has inspired her to share their life on social media. A mission that started as “Mornings with the Smiechowski’s” on TikTok has grown to a platform that raises awareness about the disease and makes connections with other families facing the same challenges.

Through social media content, the family has been able to educate healthcare professionals on the rare disease. Smiechowski says she’s received comments from health professionals and, more specifically, NICU nurses who have seen similar cases like her sons.

“It just warms my heart because we are making a difference in some way,” she said.

Now, the family is bringing their online mission to real life by launching a nonprofit called Beyond the Cry Foundation.

Beyond The Cry Foundation is dedicated to supporting families raising children with Cri du Chat Syndrome. We walk alongside families beyond the initial diagnosis, offering tangible support, resources, and faith-based encouragement.

The nonprofit foundation is set to launch on April 3.

For more information, you can visit TikTok.

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