Rare but Resilient: "Our Why" discussed on the Playeasy Podcast, Aces is coming, & A1F updates

We recently interviewed for a special episode of the Playeasy Warmup Podcast that marks the launch of the Playeasy Purpose Project. In this episode, host, Kerri Shields sits down with us to share the story behind the ⁠Austin 1st Foundation⁠ — a mission born from love, loss, & an unshakable drive to make a difference.

In July, it will be three years since we said our final goodbyes to our beloved son, Austin. Reflecting on his nine years with us, we are constantly surrounded by a rollercoaster of emotions—grief, sorrow, relief, gratitude, and profound love. As his parents and caregivers, we witnessed the relentless progression of his rare degenerative disease (UBA5 Mutation), a journey that was as grueling as it was transformative.

Check out the podcast as we open up about the journey, the importance of building community around the cause, & how we continue to honor Austin’s legacy through hope, resilience, & action — including A1F's upcoming fundraiser, the ⁠Aces Fore Austin⁠ golf tournament on Monday, May 19.

the Playeasy Warmup Podcast - Purpose Project

The Heartache and the Joy

Austin’s life was marked by incredible grit and resilience, while showing us what a bright light in a dark world can truly be. Despite the daily battles he faced, his spirit remained unbroken, brightening our lives with a light that could not be dimmed by his illness. Every day spent with him was a testament to the strength of the human spirit and what unconditional love truly means.

As his mom and dad, we experienced the deepest heartaches, watching our precious boy suffer and knowing there was little we could do to ease his pain. The helplessness we felt was often overwhelming, accompanied by an unending stream of “whys.” Why Austin? Why us? Why this disease?

These questions haunted us, sometimes filling us with bitterness and anger. It seemed so unfair for such a pure and innocent life to be filled with such suffering.

Yet, amidst the pain, there was also immense joy. Austin’s smile, his laughter, and his sheer will to live brought us more happiness than we ever imagined possible.

The moments of connection, no matter how brief, were treasures that we hold dear. His bravery in the face of adversity taught us invaluable lessons about the strength.

Faith and Understanding

Our faith in God has been both a comfort and a challenge. There are times when our faith is tested, and the bitterness threatens to take hold. We do not fully understand why Austin had to suffer as he did, and this uncertainty is a source of ongoing sorrow.

However, we choose to believe that there is a greater purpose beyond our understanding. In our hearts, we hold on to the hope that one day we will comprehend the reasons behind the pain.

This faith and positive outlook, though sometimes fragile, provides a source of hope in our darkest moments, guiding us toward a future where Austin’s legacy can shine.

John 13:7 Jesus replied, “You do not realize now what I am doing, but later you will understand.”

Choosing Light and Hope

In the wake of Austin’s passing, we faced a pivotal choice: to fold to the weight of our grief or to embrace the light and strength that Austin embodied. We chose the latter, not because it was easy, but because it was the only way to honor our son’s memory. Anger and bitterness could not be the legacy we carried forward. Instead, we fought to find meaning and purpose in our pain.

Our journey of grief is not about healing but about adapting. We have learned to navigate our “new normal,” a life where Austin’s physical presence is gone, but his spirit remains ever-present. We have found comfort in continuing his legacy, ensuring that his life, though short, has a lasting impact, through Austin 1st and its mission.

Continuing Austin’s Legacy

Continuing Austin’s legacy means different things to each of us. For some, it might be advocating for research into rare diseases, so other families do not have to endure the same heartache. For others, it could be creating a foundation in his name, supporting the needs of the rare disease community.

For us, it is about living each day with the same courage and love that Austin showed us. We hope to make a difference through his legacy of strength, resilience, and a tough spirit.

A Lasting Impact

As we approach the three-year mark of Austin’s passing, our hearts are heavy with the weight of our loss, but they are also filled with gratitude for the time we had with him. Austin’s life was a gift that changed us profoundly. His legacy is a reminder that even in the face of unimaginable adversity, there is room for hope, love, and purpose.

Time may not heal all wounds, but it teaches us how to live with the scars. We carry Austin with us in everything we do, honoring his memory by trying to live our lives with the same grace and courage he showed us. His legacy is one of light, and it is our privilege to keep that light shining, through the Austin 1st Foundation and our personal lives.

It is only with gratitude that life becomes rich.

Aces Fore Austin proceeds will support these projects.

SUPPORT A1F - REGISTER FOR ACES

⛳ We’re nearly sold out of golf teams! Thank you to everyone who has already registered to golf, sponsor, or donate. Golf entries, sponsorships, and raffle/silent auction donation opportunities are still available!

An update from OHSU's drug repurposing research for the UBA5 gene mutation.

 Austin 1st Foundation is a 501 (c)(3) Public Charity - See the impact we make and support our mission to be Champions for Rare Disease by raising awareness and research dollars for families in Alabama & beyond.