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…
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