On April 28, I’ll join a community of more than 1,000 at the WIN Waste Field House for an inspirational day of yoga, music, and fundraising—all to bring lifesaving answers and hope to the sickest children from around the world.
This year, my why is much more personal than years past. After years of so many doctors appointments, evaluations and testing, my son, Jacob (8 y/o), was diagnosed with a rare genetic condition in December of 2023 that less than 200 children have been diagnosed with worldwide. This is associated with his neurodevelopmental disorder characterized by hypotonia, intellectual disability, speech impairment, Autism, and ADHD. Unfortunately, additional features include epilepsy, brain and cardiac anomalies, ophthalmologic, skeletal, and endocrine findings, as well as early onset Parkinson’s.
Mason, our 3-year-old is also undergoing many evaluations currently.
- give children battling the most complex diseases treatments they can’t find anywhere else;
- help children in your town and those across the world get a second chance;
- fuel 3,600+ researchers working to find cures at the world’s leading pediatric research hospital;
- help patient-families (many of whom travel from far away to find answers) with urgent needs, including housing, food and clothing;
- bring crucial care to families through not one, but four outpatient psychiatry clinics;
- provide wellness services like Reiki, yoga and a safe place to simply exhale for families facing the stress of caring for a critically ill child;
- and so much more.