This year, instead of gifts for Shreyas, we’re hoping you’ll help us support something even more meaningful.

As many of you know, our son Shreyas is one of only 150 known people in the world living with NGLY1 Deficiency. It’s an ultra‑rare genetic condition, and one of the hardest parts is that it’s progressive — meaning that over time, it can slowly impact more areas of his health, development, and daily life. As parents, that’s a reality we carry with us every day. We celebrate every win, but we also know how important it is to push for research now, while it can still make a real difference in his future.

Being part of such a small community can feel isolating at times, but it has also connected us with an incredible group of families and researchers who are fighting every day for progress.

One of the biggest sources of hope for us is the Grace Science Foundation. They’re leading the global effort to understand this condition and develop treatments that could slow, stop, or even reverse some of the challenges children like Shreyas face. Their work gives us something we hold onto every single day: hope.

Birthdays are a reminder of what really matters. For us, that’s giving Shreyas the best possible future — one filled with comfort, opportunity, and breakthroughs that could improve his quality of life.

If you’re able to donate, even a small amount, it truly makes a difference. Every contribution helps move research forward for Shreyas and the small community of families walking this same path.

If donating isn’t possible, sharing this fundraiser or keeping Shreyas in your thoughts means just as much.

Thank you x