Hailey’s Grace is a journey that is as full of love as it is of challenges. This journey has transformed our family into who we are now. It’s a path I never anticipated, yet it has strengthened us, fostered compassion, and built our resilience, all while maintaining grace.

 Our beautiful warrior has Aicardi-Goutières Syndrome, or AGS. Aicardi-Goutières syndrome is a rare genetic disorder that affects the brain, spinal cord and immune system. It is a type of leukodystrophy, a group of conditions that affect the white matter of the brain. In the case of AGS, the immune system mistakenly attacks the body's own tissues, specifically targeting the white matter (myelin). Beyond the medical terminology and diagnoses, it is Hailey's vibrant spirit, unwavering determination, and boundless love that truly shapes her world and ours.

When we first learned about AGS, we were flooded with fear, grief, and confusion. The future seemed unclear, and we felt lost in a reality that was far from what we had imagined. However, as we had time to process, we came to understand the many challenges that AGS may present for our daughter. This journey will undoubtedly shape a path for her that differs from the one we had anticipated. While it will influence various aspects of her life, we firmly believe that it will not define who she is. We are dedicated to being her voice, a steadfast advocate, her support, and to do whatever we possibly can to help aid in finding more advanced treatments and hopefully a cure.

Having a child with AGS also means embracing a new definition of strength Strength isn't solely about having all the answers or never feeling afraid. Often, true strength lies in the everyday commitment to show up, to love your child with all your heart, and to advocate for them when they cannot advocate for themselves. It’s found in the joy of those small milestones, like hearing a word spoken for the first time (again) or seeing a new skill emerge. It’s about discovering hope in unexpected places, where others may not notice it.

Navigating life with a child who has AGS has not been the path we envisioned, yet it is the path we were destined to embrace. This experience has helped us appreciate the little moments. Hailey exhibits unwavering determination, putting in such effort to accomplish even the simplest tasks. Every day, she inspires me with her fierce spirit and strong will with the obstacles she overcomes despite her limitations. There is nothing she shies away from trying. She aspires to do everything her brother does, and her tenacity is truly motivating, especially when I consider the additional hurdles she must overcome. Her perseverance fills my heart with admiration and pride.

To any parent navigating a journey alongside a child with a rare or difficult condition, I want to say this: You are stronger than you think. The immeasurable love you have for your child is your greatest support. There will be times when the challenges feel overwhelming, but within you resides a remarkable resilience that can conquer any hurdle. It's important to remember that you are not alone; there is always light to be found, even on the darkest days.  With Hailey's Grace, our mission is to educate and empower parents, fostering a supportive community for those navigating similar challenges. I believe that while our individual journeys may feel isolating, when we come together, we become a powerful force for change and support. Together, we can spread awareness, share experiences, and uplift one another, creating a strong network of compassion and strength for all families.

This is Hailey’s Grace.