Some things you should know before reading the linked article:
There is a part of my heart that does not want to post this. It is too intimate. Too raw. To share it myself feels somehow cheap. Yet not to share feels feels like a breach of courage.
More than once I asked the reporter to find another family. Trevor's relapse has brought us to our knees and I'm so very weary. I'm weary of fighting. I'm weary of sharing our story for naught. Over the weekend Trevor had a seizure in the pool, which would last three minutes. When I close my eyes I still see his face plunging beneath the water as I tried to get to him. I still feel the panic of trying to lift his convulsing non-responsive body out of the water. I am soul weary with this battle. This battle which includes more than seizures, as if that alone were not enough. I just want to live and love my son in peace.
I know it's easier to look the other way and pretend these things don't exist. Yet, everywhere I turn, my line of sight is brimming with families like my own, thrust into a world filled with seizures and sorrow. I stand eleven years into this journey. My marrow burns with the knowledge that these families have a life time before them of finding the strength for advocacy as it relates to accessing treatment for their children. This knowledge compels me to speak when I would not.
Though images of our family fill the pages of this particular story, this is not a singular narrative. This is about every family navigating the horrors of catastrophic medical crisis. One day, that family may very well be your own.
Anatomy of a 97,000% drug price hike: One family's fight to save their son