Steph's Journey

This is Jax's Canavan Disease story, shared through his journey, his strength, and the life he has lived beyond the expectations placed before him. Hey everyone, I'm Jax, and I just turned 11, which is kind of a big deal! I was born with a rare brain condition known as Canavan Disease, a type of leukodystrophy. It's a life-limiting disease, and my time here compared to most is short. This condition comes with many challenges, and it takes a whole team of incredible people to

My midlife "unraveling"—I actually prefer midlife awakening. I open up my most vulnerable self in hopes that it resonates with someone. It's not easy to share your most painful stories with strangers, but I do this because I care about those who are suffering. I have a deep concern for people who are struggling and for those who have been dealt a difficult hand in life. I hope that through my stories, someone else can find connection and healing, or be inspired to embark on t

My journey raising a medically fragile child the last ten years has been the most challenging and rewarding period of my life. It was undeniably the hardest time and yet most fulfilling time of my life. I lost the life I envisioned, the relationships I expected, and the son I thought I would have. I faced financial difficulties, marital issues, loss of identity, a crisis of faith, debilitating depression, low self-worth, diminished self-esteem, a lack of joy in life, and batt

My experience when my son was diagnosed with his devastating life limiting disease called Canavan disease. That was the day my life turned upside down and inside out. My lived experiences being a mom to a medically fragile child. How being a special needs mom looks different from others and the challenges we face. The fight for my life dealing with grief loss and trauma. The strength it took to climb out of a dark place and deciding to make the best out of our situation.

The horrible accident that almost took my medically fragile child life. The fight for his life to keep fighting. Jaxs story being the most resilient person I know. The trauma and heart ache my family went through. Advocating for your child in the hospital setting. Little hero's that inspire us and the resilience we all have within us. The hardest times clears a path for unexpected blessings.

Grief changed me in ways I never expected. I became angry, lost, and disconnected from the person I used to be. This is the story of some of the darkest years- and how I slowly began finding my way back.

The day my life changed forever. After receiving my sons scary diagnosis I was heartbroken. My whole world was turned upside down and inside out. I never saw this coming as i was filled with darkness and anger I had a spiritual experience like never before. My journey caring for a medically fragile son and becoming a special needs parent. Through this journey I have found wisdom healing and faith. My son was my biggest teacher and best friend. How I coped with Grief loss and