Since the day Sebastian was diagnosed with Skraban-Deardorff Syndrome (SKDEAS), we have been his champions and fighting to give him a better future. Sebastian's joy radiates all around him as he pushes through all the struggles and we could not be prouder of everything that he's accomplished. 

Our family is happy 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 Sebastian 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 Sebastian who he is: his love for watching musical songs on Youtube Kids, his mischievous laugh when he tries to eat Doritos for breakfast, and the incredible way he continues to work hard towards his goals. 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.