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Story Spotlight: Winnie the Warrior
Sometimes, a diagnosis is stumbled upon secondary to other issues. Without newborn screening, this disease is hiding away ever so subtly—undetected. For children like Windsor, it’s an acute illness that exposes the bigger picture and leads to the life saving diagnosis of a progressive rare disease like a Pompe. Windsor, lovingly known as Winnie, was…
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To Those Who’ve Come Before Us
There are many special gifts exchanged between adults and children diagnosed with Pompe Disease. These two perspectives really highlight the spectrum of this disease and the importance of newborn screening. As a mother of a child diagnosed, the diagnosed adults meant so much to me. For my family, they offered a real life view of…
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Ready Or Not, Here it Comes
As a parents of a child with Pompe Disease, I am always watching my back. Pompe isn’t at the back of my mind—it’s the front too. This is most obvious when I notice something off about my child. Every minor thing I notice, I catch myself asking “is this Pompe?” That milestone that’s a little…
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Not Today, Pompe
Not today, Pompe. The majority of the time that phrase is used in the manner of triumph and strength. It’s with pride that I say it, knowing that Pompe isn’t getting us down. And some days, it’s dismiss. Not today, Pompe. Because today, I can’t. Because sometimes I feel exhausted and overwhelmed. Sometimes I feel…
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Thank you, Village
Thank you to the people who first breathed hope into me during my darkest days. You found me, or I found you, and I can’t help but feel like everything changed then. You knew. You knew how I felt, because you had felt that too. You knew what I feared, because those fears were once…
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Perspectives of The Pompe World 