We are the Domol and Seidl families, and we are running to support Willa as Team Willa Will. Our team is comprised of her parents, aunts, uncles, and grandparents from Wisconsin, Michigan, Illinois and California. We all love her and want to do what we can to help fund research.
Willa was diagnosed with Rett Syndrome early this year after she experienced further language regression and the onset of seizures. She was three at the time. At first, we felt paralyzed while we processed the diagnosis and what it would mean for her and our family. We really struggled to come to terms with it… and we still struggle some days. What helped turn our grief into action was finding such a robust and supportive community in the Rett world. We’re all working to help each other day-to-day and to aggressively seek a cure together. We’re so thankful to contribute to that now and to have so much hope for the future.
We truly believe that Rett Syndrome will be the first neurological disorder to be cured. And we hope that this cure also leads to huge advances in treatments for other neurological disorders. We will do what we can to speed that along for Willa and for every other girl, boy, and family impacted by Rett.
The Disney Princess Half Marathon Weekend serves as a perfect opportunity to be in a place that we love, benefiting a cause that we love. With family members spread all over the country, Disney is a familiar reunion site and a good place to escape Midwestern winters. The Domol Family has been visiting Disney World annually for decades. It was a big part of family life growing up and continues to be for the next generation. It will be a great weekend! We look forward to meeting other families and supporting GP2C!