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

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