Dear Sanfilippo Syndrome


Dear Sanfilippo Syndrome,

It’s been six years. Six years since we learned of your abhorrent and unwelcome presence in our lives.

And in those six years, you have changed every aspect of our lives. Because of you, everyone and everything is different. The rage that lives deep in my bones because of what you have stolen from us, from them, has enough force, enough energy, to rival the power of the sun. The ache that has taken residence inside of my soul is so heavy that even getting out of bed seems less possible than breathing under water at times.

Because of you, I have watched two of the most innocent and loving human beings to ever grace this earth lose pieces of who they are and who they could have been every single day. Because of you, everything happy has been tainted with fear of what’s to come and longing for what has been lost. Your destruction in the lives of those you touch knows no bounds.

You killed my son. A child whose light burned so bright, whose spirit was larger than life, whose laugh could fix everything. You killed a child who stole the heart of every single person he knew. A child who never deserved to know of your existence. And as if that weren’t enough, every single day you slowly twist the vice you have fixed around our living son. I watch, helplessly, as you inflict your deja vu of pain and misery on yet another of my most precious treasures in life.

How dare you. How dare you continue to take from us such pure and innocent beauty. How dare you rob this world of a soul so precious. How dare you slowly steal a child who has never hurt anyone, who loves and lives life in the most gentle way. A child with not even an ounce of malice in his being. You sicken me. I have never hated anything with such passion as I hate you.

But I want to tell you something. As much as you’ve taken, as much as you have tore into the depths of my soul, my being, and my life…you will never take everything. I will never let you have it all. Victory will never be yours.

You can never take away our love. Because even stronger than my hate for you, is my love for them. You can never erase the memories, the experiences, the strength and united front we have presented against you in resolve to make the most of the time we have. You may win the battle for their health, and even their lives, but you will never win the war.

Because even after you’ve stolen our boys, their legacies will always live. And as much as the pain rips through me at the thought of facing life without them here, I will fight on. I will find happiness, spread love and hope, and I will do so carrying them with me every step. And you can never stop that. Your power is no match for the love and commitment I have inside of myself to make sure that someday, you no longer exist. You are not stronger than my will to make sure my sons lives mattered, you are not stronger than their meaning.

Because You can never take away what we have built in spite of you. You can never silence the voice I use to shout light into the darkness you attempt to spread. You can never have my will to keep living and finding beauty in any moment I possibly can.  I will live on, continue to find happiness, and love, and remember my sons and their amazing fight with a smile until I take my last breath, all in spite of you.

Your days are numbered, Sanfilippo Syndrome, but my love and my resolve, and my sons’ memories and legacies  will live forever.

Take that.




3 thoughts on “Dear Sanfilippo Syndrome

  1. I also had two sons with Sanfilippo Syndrome and can’t tell you how much your words meant to me. They still matter, Clinton & Zachary, as do your sons. That is so important to me to remember, that is wasn’t a dream and nightmare that it was, it was real. Thank you for sharing my feelings. You inspire me to write about my own time with my sons.


    • Tracey, thank you so much the kind words. I’m so sorry to hear you know this pain as well. You’re right, your sons mattered, and I’m so touched that you feel inspired to write about their story. I know it has been so therapeutic for me.

      All my love,


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