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To The Parents of a Newly Diagnosed Child
Firstly, I’m sorry for the news you’ve been given. I know that it feels like your world has come down into pieces by receiving your child’s diagnosis. Maybe you were completely caught off guard, or maybe you’ve known something wasn’t right—either way, I know this feels devastating all the same. So from the parents who…
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Since I Thought I’d Lose You
Since I thought I’d lose you, I am not the same. In both good ways, and in more complicated ways, I am changed as a parent. I am more afraid now. The fear that shook our lives has crept into every corner of my mind and takes the stage from time to time. Like I…
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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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Perspectives of The Pompe World 