Paige Crowder, from Indiana, faced an unexpected journey when she learned her son Levi would be born with Down syndrome. Levi, born in January 2025, brought unique challenges, but Crowder embraced them and became dedicated to raising awareness about Down syndrome.
Crowder shared with Newsweek how Levi’s diagnosis changed her perspective. Initially, like many, she had misconceptions based on assumptions rather than real experiences. Being Levi’s mother altered her views on Down syndrome in unanticipated ways.
Down syndrome, or trisomy 21, is a genetic condition characterized by an extra copy of chromosome 21. It results in distinct physical attributes, learning challenges, and behavioral differences. In the United States, approximately 5,700 children are born with Down syndrome each year, often requiring lifelong care and facing heightened risks for specific health conditions, according to the Cleveland Clinic. Nonetheless, with enhanced support, many lead active lives well into adulthood.
Crowder sees her son as more than a diagnosis, describing him as funny, affectionate, determined, incredibly happy, and unique. Through her Instagram account, @paigevictoriacrowder, she documents Levi’s everyday experiences, showing his joy, family vacations, milestones, and the love he receives.
She aims to portray Levi as a child first, highlighting his personality and ordinary and extraordinary aspects of his life. Crowder hopes others will learn about Down syndrome through witnessing Levi’s life rather than solely understanding the condition.
Reflecting on receiving Levi’s diagnosis, Crowder wishes to reach out to those who may be in similar situations. She remembers feeling uncertain about what Down syndrome meant for her baby and their future. She wants other mothers to see the potential beauty in their own children’s lives after a diagnosis.
While Down syndrome is lifelong, there are treatments available to help children reach their full potential, including physical and speech therapy, early intervention and special education, eyeglasses or hearing aids, and management of associated health conditions. Around half of individuals with Down syndrome encounter heart conditions.
For Crowder’s family, life is similar to any other family with a toddler, filled with milestones, routines, messes, cuddles, laughs, and chaos. Levi has additional needs, but these don’t define the family’s experience. Crowder emphasizes the typical familial bonds and experiences surrounding Levi.
The story was edited by Sirena Bergman and Emma Lee-Sang.