The Meaning of Look Mom
Growing up, my sisters and I had a habit of saying “Look, Mom!” whenever we saw something beautiful like mountains, oceans, sunsets, or anything that amazed us. It was our way of sharing wonder with her. We shared everything with Mom: photos, memorable moments, and even silly things that made us laugh.
Even now, after losing her, we still catch ourselves saying it, sometimes out loud, sometimes in our heads, as if she’s still right there with us.
When we travel or witness something breathtaking, we still say:
“Look, Mom…”
Because in our hearts, she’s still part of every beautiful thing we see.
Why This Project Exists
In 2022, my mother passed away from Dermatomyositis, a rare autoimmune disease that is still widely misunderstood and underrepresented. Her story, and the pain of navigating a broken healthcare system, caused me to speak out, document, and advocate.
Look Mom is a living tribute.
It’s a personal archive, a place of healing, and a platform for awareness. It’s my way of turning grief into purpose.
Meet Ali Gutierrez
I am a nurse, doctoral researcher, and healthcare advocate dedicated to turning personal grief into clinical awareness and systemic change for the rare disease community.
Combining my frontline bedside nursing experience with my doctoral research, I work to bridge the critical gap between lived patient experience and medical practice. My advocacy centers on sharing my mother’s story to highlight the dangerous reality of diagnostic delays, provider dismissals, and the overlooked pain experienced by Dermatomyositis patients.
Through my doctoral research, I focus on the intersection of physical chronic illness and mental health, measuring how Dermatomyositis impacts patients’ overall quality of life.
Through Look Mom, I honor my mother’s legacy every day by fighting for earlier diagnoses, better clinical education for providers, and holistic, compassionate care for every patient.