23/07/2026
💔
Today I am angry.
Anger fills my chest like fire. Listening to Haidyn’s cries for the last few days almost feels like I’m filled with rage. A heartbroken, soul-burning, rage. Not with her, but with Sanfilippo Syndrome and the suffering it brings.
As I’ve spent the day allowing it to move through me, I am reminded that I’ve always been familiar with fire. Growing up, I spent many nights around a roaring fire with my dad, my uncle and cousins. As an adult and a mother, I now understand that I’ve always had a raging fire inside of me. Maybe that’s why I was mesmerized by its almost violent yet seemingly poetic, dancing flames, flickering until it burnt out.
I am angry at her suffering - a suffering that no child deserves. I am angry because there are brilliant scientists dedicating their lives to diseases like my daughter’s, and yet treatments remain trapped in years of waiting while Sanfilippo continues moving forward without permission. Neurodegeneration does not wait on paperwork to be finished, another meeting to be scheduled, or profit margins to be met. As parents, we don’t get to file an extension with Sanfilippo Syndrome.. the clock keeps ticking and the syndrome keeps progressing.
I am angry because medication like an antibiotic can put out one fire, while igniting another. It can save her from an infection and also throw her gut into chaos. Can we create something that can heal and doesn’t have to destabilize another system in the process?
Western medicine saves lives yet fails to treat the body as a whole living ecosystem. Haidyn’s gut speaks to her brain, her brain speaks to her neuro-storms and seizures, her seizures speak to her sleep, her sleep speaks to her nervous system, her nervous system speaks to every part of her body. Every part of the body speaks to each other. Yet, we are still dividing medicine into pieces and specialties as if the body ever agreed to such boundaries.
The neurologist studies the brain, gastroenterologist studies the gut, geneticist studies the genes, cardiologist studies the heart, infectious disease studies the infection and so on. As helpful as they each can be divided, Haidyn doesn’t live in specialties. She lives in one, amazingly connected body and a body where nothing happens in isolation. Even as Sanfilippo syndrome is still wildly misunderstood, it is obvious that her entire body is all connected.
Much like life, Sanfilippo continues to teach me that it cannot be placed into a multitude of neat, tiny compartments. Everything belongs to everything. Everything is impacted by everything. Remember? An ecosystem and a paradox.
Organs, emotions, genetics, nervous systems, environment, grief, hope… LOVE. It’s all in conversation together.
I have watched this disease ripple through every piece of my child, her life and our family. I no longer believe that anything exists alone because I do not have the luxury to look away.
So yes, I am angry. I am angry to be in a world that looks away and avoids FEELING the very anger that I feel. A world that avoids feeling almost anything by scrolling, distracting, intellectualizing, telling others that everything happens for a reason or rushing them towards acceptance before they’ve even had a chance to scream… because their grief causes discomfort. All directly intertwines with why we are missing so many connections - emotionally, biologically, medically and environmentally.
I do not have the privilege to look away. I spend my days administering medications and researching their interactions/reactions. I am prepping and cleaning feeding tubes and stocking medical supplies. I witness the suffering I cannot fix, after trying everything in my smorgasbord of remedies. I am holding her through seizures, pain and discomfort. I am rubbing her little face through sleepless nights. Even when her cries make me feel as if I could run 100 miles, I do not get to leave when it feels inconvenient or unbearable. My family is forced to feel it and face it.
Honestly, I think that’s a lot of the divide. It’s not just healthy and sick or modern medicine vs nature. It’s between those that have the privilege of looking away and those who love someone so much that they can no longer fathom looking away. That deep, heavy and unconditional love has made me incapable of indifference. Many have stated that parents like me are so strong.. but many of us have simply lost the ability to pretend that suffering isn’t happening just because it may make another less comfortable.
Today, I am angry because love leaves me no other honest feeling. I don’t want this fire to consume me. I also pray it never goes out, because the day it does is the day I have learned to look away.. and I REFUSE.
