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To Sanfilippo Syndrome, the Disease That Will Take Both of My Boys


Dear Sanfilippo Syndrome,

It has been six years, six years since we learned of your abhorrent, unwelcome presence in our lives. 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, 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. My love for them is stronger than my hate for you. 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 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.

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, my resolve and my sons’ memories and legacies  will live forever.

Take that.