Two of our children are living with Cockayne syndrome, a very rare genetic disorder that affects growth, development, and many parts of everyday life that eventually lead to a very shortened life expectancy . Because it’s so rare, research is limited — but this May we’ve been given an incredible opportunity to travel to Slovenia so they can participate in research that may help scientists better understand this condition.

Opportunities like this don’t come often, and being part of this research means our kids could help move things one step closer to better treatments — and hopefully someday a cure.

We were able to cover the cost of our flights, but the rest of the trip is more than we can manage on our own. Traveling internationally with children who have medical needs takes a lot of preparation, and we’re reaching out to our community for support.

If you feel led to donate or even just share this fundraiser, it would mean more to our family than we can express. Every share helps spread awareness, and every bit of support helps get us closer to making this trip possible.

Thank you for taking a moment to read our story, for supporting our kids, and for helping us be part of something that could bring hope to families like ours. ❤️