Eli S, age 15 months

Photograph by Emily Barnes (2023)
The first thing you might notice when you see Eli is his amazing platinum blonde hair. What you might not immediately see, is his resilience—it is one of the first words that come to mind when Eli’s mom talks about her son. “He’s been through so much in his 15 months of life and everyday he continues to defy all odds” says Lauren. “To see him fight through therapies, surgeries and having a breathing tube shows us how strong he really is. We call him our mighty little world changer.”

Eli’s diagnoses include laryngomalacia, tracheomalacia, bilateral hearing loss, Waardenburg Syndrome, and global delays. He has been through 11 hospitalizations due to breathing difficulties, double pneumonia, COVID-19, and feeding tube difficulties. Currently he’s in six therapies every week to help him with his development. His parents don’t know what the future holds for him, but they have set him up with everything he needs to get there.

During therapy, Eli gives it his all. He’s just started signing “mama” which makes his family incredibly happy! This little boy is also independent—he wants to do everything on his time.

His big brother, Enoch, enjoys helping Eli in therapy and caring for him. Lauren says Enoch sees nothing unusual about Eli’s needs and she hopes the world will do the same. She believes Eli’s story can help guide people to a journey of inclusion, advocacy, and acceptance.

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Family Connection of South Carolina provides services and resources to families who have a child with a disability or specialized healthcare need. Since 1990 we have served more than 100,000 families and today our services are needed more than ever. We focus on parent-to-parent support, guidance with navigating the complex healthcare system, and assistance with school meetings and special education plans.