In its simplest form, this is about our sweet Willa Jane. On August 7, 2017, Willa was diagnosed with an extremely rare genetic disease called Adenylosuccinate Lyase (or ADSL deficiency). There are less than 100 cases ever identified in the world. There are no proven cures, treatments, or therapies. Primary life challenges typically include psychomotor retardation, chronic seizures, and autistic behavior. ADSL is life-threatening to some and life-limiting to others depending on the severity of the deficiency.
My wife, Sarah, and I were not prepared for this. Of course, no parent is. We are learning to navigate one day at a time. I can say this with confidence; it’s not easy.
In many ways, this page is our call out to anyone who has dealt with ADSL, or other rare diseases generally. We welcome you to reach out and share your stories with us.
This is also our chance to share Willa’s life with those we love so dearly, beautiful people from all over the US who are not able to be with us physically as we continue on this journey.
But if I zoom out to 100,000 feet or so, this page is about the way we measure our lives. It’s about the challenges that we all experience and the lessons we learn when faced with various forms of tragedy, loss, or life-altering events. Eleanor Roosevelt used to say often “Learn from the mistakes of others. You can’t make them all yourself.” And so, I share. Thanks for engaging.