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Showing posts from January, 2021

Not too Rare to Care

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  Superior Mesenteric Artery Syndrome, to the majority of the world these are merely four random words put together, having no significant meaning. To our family, these words are anything but random or meaningless. These words have taken us on a journey of discovery, fear, anxiety, relief, and sadness. Today is SMAS Awareness Day. It is the day where I wish I did not need to explain the purpose of wearing purple. It is the day when I wish the same wish as the other 364 days of the year - that no one else needlessly suffers from this disease and the ignorance which surrounds it. Though no two journeys are the same, I would like to share with you the necessity for SMAS awareness day. This is a glimpse into our journey - Jayde's journey. Since her diagnosis almost three years ago, Jayde-Rhiannon and I have cried a river of tears together, and separately. It was a diagnosis made sixteen years too late. I witnessed the light in her eyes extinguish when her doctor informed me, "She