Today’s episode is a story of hope, healing, and unfortunately heartbreak.
My guest today is Joel Clausen. While this story might be an emotional and difficult one to hear, I hope you’ll get a ton of value as he shares his baby boy’s journey and how their tragedy turned into life saving legislation.
When their youngest son, Bryce, was only 6 months old, Joel and his wife Andrea noticed he was experiencing some behavioral changes and developmental delays. His doctors explained that since he had been born a few weeks earlier than expected, these delays were normal.
But Joel and Andrea still had a nagging feeling that something wasn’t right. They trusted their parental instincts and persisted on getting a diagnosis.
On the day Bryce turned 9 months old, they received the devastating diagnosis that no parent would ever want to receive: Bryce was diagnosed with Krabbe Disease, an extremely rare and destructive genetic disorder that affects brain nerve cells and the nervous system. Babies with this disorder generally do not survive past the age of two.
Without knowing how much longer they’d have with their baby boy, Andrea, Joel, and their oldest son Levy set out on an adventure they called Bryce’s Greatest Hits. They were determined to let Bryce experience as much joy as possible during his short life.
They also set into action what would become the fastest bill to be signed in Indiana history, Bryce’s Bill, a legislation which added three new diseases to newborn genetic screening tests.
Joel shares with us the monumental role the community around them played after the diagnosis, how to find hope in the face of heartbreak, and how to make the most out of this adventure we call life.
Key Takeaways with Joel Clausen
- How difficult it is to receive a diagnosis for a disease that you’ve never heard about before.
- The experiences that they were able to share during Bryce’s last 5 months on their “Greatest Hits” tour.
- Always trust your instincts as a parent and be the voice for your children.
- How a community can support your family through hardship.
- The power of social media, spreading awareness, and giving back.
- The importance of genetic screen testing on newborns and how it can save lives.
- How difficult it is to find funding for cures of rare genetic disorders.
Joel Clausen Tweetables
- “It’s about spreading awareness. These rare diseases just don’t get the funding, and that’s the battle that we face moving forward.” – Joel Clausen
- “Almost everyone wants to help, sometimes they just don’t know how. And when you put it out there into the world, it’s incredible what people are capable of. It just shows humanity at its best.” – Jamie Freedlund
Resources
- Learn more about Krabbe Disease
- Video of Bryce’s Battle on YouTube (Bryce Passes Away on Vacation in Florida)
- Article: Bryce’s Battle Family Gets Law Change After Deadly Diagnosis
- Article: Indianapolis Family Shares Importance of Newborn Screening
- Ronald McDonald House Charities
- The Quinn Madeleine Foundation
- Make A Wish Foundation
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