Twelve Candles After Silence
Content note: This post includes a personal reflection on medical trauma, a child’s medical crisis, and survival. Not Ready Yet: Twelve Candles After Silence The room was supposed to be…
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Did You Even Know You Were Looking at a Miracle?
“Did you even know that you were looking at a miracle?” That question caught me completely off guard. It came from a gentleman sitting nearby in the waiting room of…
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The Day He Ran was Our Beach Miracle
I can still feel the sand under my feet and I can still remember The Day He Ran. Our Beach Miracle. The sun was setting, the breeze was just right,…
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What You Don’t See – Life Today with OMS
These days, life looks different than it did during the thick of H’s treatments. We’re no longer spending weeks on end in the hospital, juggling chemo, IVIG, ACTH, and emergency…
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When Your Child Is a Medical Zebra or an Okapi
As I continue sharing our journey with Opsoclonus Myoclonus Syndrome, I wanted to highlight a resource that may help bring clarity to people who have never heard of this rare…
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Understanding Opsoclonus Myoclonus Syndrome (OMS)
Medical information note:This post is shared for education and awareness only. It is based on our family’s experience and general information about OMS. It is not medical advice, diagnosis, or…
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New Video from NORD
New Video from NORD This video from NORD may be helpful for family members, friends, teachers, or anyone trying to understand what OMS can look like. Sometimes a visual explanation…