Every morning, Rowen starts his day with a smile that could brighten anyone’s mood. His gentle nature and quiet strength remind us daily what it means to face challenges with courage and grace. Though life with Skraban-Deardorff Syndrome brings its share of challenges, Rowen continues to meet them head-on, teaching us about patience, love, and joy in the process.

Our family is proud to join the SKDEAS Family-Led Giving Campaign, a community-driven effort supporting the SKDEAS Foundation. Funds raised through this campaign help advance understanding of Skraban-Deardorff Syndrome, create helpful resources for families, and build a stronger, more connected global community.

By contributing, you’re not just supporting research or programs. You’re standing alongside Rowen and families like ours who face each new day with hope. Together, we can help ensure that every family affected by Skraban-Deardorff Syndrome finds the support, information, and encouragement they deserve.

At home, we celebrate the little things that make Rowen who he is: his love for Disney movies, his laughter on the trampoline, his endless energy at the pool, and the incredible way he’s found his voice using his AAC device. Those everyday moments mean everything to us. They’re reminders of how far he’s come and how deeply joy can shape a family’s journey.

Next July, we’ll head to Philadelphia for the SKDEAS Family Meeting. It will be a special opportunity to reconnect with friends, share experiences, and celebrate how far this community has come together. There’s something truly meaningful about being surrounded by families who understand this journey. It’s a reminder of why this campaign matters so much and how powerful connection can be.

Your kindness and support help keep that spirit alive. Whether you choose to donate, share our page, or simply take a moment to learn about SKDEAS, you’re helping families like ours feel seen, supported, and never alone.