Team Rowen!

Kyle Hillman / Family-Led Giving Campaign

Every morning, Rowen greets the day with a smile that lights up the room. Known for his gentle spirit and kindness, he faces each day head-on, with a resilience beyond his years. Rowen’s life may come with challenges, but he takes every step with bravery and grace, inspiring everyone around him.

Rowen lives with Skraban-Deardorff Syndrome, a rare genetic condition, and his journey has taught us the power of hope, community, and perseverance. Our family, along with others facing similar journeys, is joining the SKDEAS Family-Led Giving Campaign to raise funds for research and support. Every dollar raised will go toward understanding this condition better, developing resources for affected families, and creating a brighter future for Rowen and others like him.

By contributing to this campaign, you’re not just supporting a cause; you’re standing beside Rowen and countless families who greet each new day with courage. Join us in making an impact for Rowen and all those who continue to inspire hope. Together, we can turn small acts of kindness into big strides forward.

  • $1,723

    Raised

  • $2,600

    Goal

  • 28

    Supporters

  • 4

    Days Remaining

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About Team Rowen!

Together, as a family, we make the most of every moment, turning ordinary days into treasured memories. We love seeing Rowen's excitement as he watches Disney movies, jumps on the trampoline, swings on the swing set, splashes around in the pool, or races on his plasma car. These experiences are precious to us, allowing us to celebrate his bravery and savor the simple joys of life together. Rowen’s journey with Skraban-Deardorff Syndrome has deepened our appreciation for family, resilience, and the importance of each moment. Through it all, we stand united, growing stronger and more connected every day.

This past July, we had the special opportunity to gather with Rowen’s friends, also living with Skraban-Deardorff Syndrome, in Philadelphia. Being together with other families who truly understand this journey was incredibly uplifting—it reminded us how important it is to have a community that shares in both the challenges and the joys.